INDIVIDUALISATION OF SERVICES FOR PEOPLE WITH DISABILITIES

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Individualisation of Services for People with Disabilities
INDIVIDUALISATION OF SERVICES FOR PEOPLE WITH
DISABILITIES
Unit Aim
The aim of this unit is to facilitate the student to reflect on the nature and importance of
individualised service provision, to identify the characteristics of an individualised service and
understand the ethical issues associated with individualised services for individuals and the
wider social system.
Unit leArning objectives
By the end of this unit the student will be able to:
• critically discuss the human rights framework supporting the development of
individualised services
• identify and analyse the legislative and regulatory framework which impacts on
individualised services in Ireland
• identify the potential positive and negative impacts of the rise of individualisation of
services
• critically discuss the role of citizenship and quality in the development of individualised
service provision
• identify the core elements of the individualised service
• discuss the role of control over funding in the context of individualised services
introDUction
The idea of individualised supports for people with disabilities is first and foremost about
enabling people live the life they choose; about putting the person in charge of their life in the
same way as every other citizen. It is intricately linked to the right to Independent Living as
defined in the Convention on the Rights of Persons with Disabilities (CRPD) and to ideas
about citizenship. The move towards individualisation of services is a move away from
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paternalistic services for disabled people where people have little say in how, when or where
services are provided. It represents ‘… an embrace of individual decision-making and autonomy
driven by active participation and recognition of legal capacity, together with the provision of supports
to promote and facilitate agency and informed decision-making, and individualised selfdetermination.’(Power, et al 2014, 30)
Individualised Services is also referred to in policy and academic literature as Personalised
Services, Individualised Supports, Self-Directed Services and Supported and Individualised
Living among other terms. In essence they all refer broadly to the same approach and in this
module the terms will be used interchangeably. An additional element is the control over
personal budgets in individualised services, this will also be discussed throughout.
Definition
Individualised supports can be defined as:
Individualised Services (IS) must be considered within the broad Human Rights framework
and in particular the CRPD framework. In fact it is difficult to see how people with disabilities
can fully realise their human rights in the absence of individualised supports.The first of the
General Principles (Article 3) of the CRPD is that of ‘Respect for inherent dignity, individual
‘… a personal social service which includes the range of assistance and
interventions required to enable the individual to live a fully included life in the
community. Individualised supports require the provision of a flexible range of
supports and services that are tailored to the needs of the individual, and are
primarily determined by the person.This provision enables people with disabilities to
live as full citizens instead of having to fit into standardised models and structures.
Supports include assistance provided by others, whether in the form of personal
care, communication or advocacy support, learning support, therapeutic
interventions, aids and equipment, adaptations to the physical environment, and so
on.
Irish Government, Expert Reference Group
Report on Disability Policy Review 2010, p62
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autonomy including the freedom to make one’s own choices, and independence of persons’. Arguably,
the only way to ensure this principle is through individualising the services and supports a
person receives. For how can the freedom to make one’s own choices, one’s individual
autonomy and one’s ability to act independently be respected if one is living in circumstances
which limits what the person can do and be because of dependence on shared supports for
activities of daily living, particularly where these supports are not of one’s own choosing and
are not directed by the individual. For many disabled people ‘… support represents an essential
pre-condition for their active and meaningful participation in society, while preserving their dignity,
autonomy and independence’ (UN Report of the Special Rapporteur on the Rights of Persons
with Disabilities, 2016). Having the right kind of support to act independently and to have
choice and control over one’s life are essential in enabling people exercise their human rights
and these elements are also at the heart of the idea of individualised services.
Two of the pillars of the CRPD are the right to Independent Living and Community Inclusion
(Article 19) and the right to Legal Capacity (Article 12) and these are also at the heart of IS.
The right to Independent Living asserts the right of all disabled people to choose where and
with whom to live, the right to personal assistance in the home and in the community and the
right to accessible generic community services. The right to Legal Capacity asserts the right
of all disabled people to have their decisions recognised and respected and the right to
support in exercising their legal capacity. Where people require support because of an
impairment, they are highly vulnerable to rights infringements if the configuration, the type or
the amount of support they receive is decided by others, is shared with others who also
require support or is only available in particular locations. If people are to choose and make
decisions about where, with whom and how to live and to participate in their community then
the only way to ensure their right to do this is through the provision of individualised services
and supports.The General Comment on Article 19 of the CRPD issued by the United Nations
in October 2017 recognises that this right ‘..means exercising freedom of choice and control over
decisions affecting one’s life with the maximum level of self-determination and interdependence within
society’ (UN General Comment No. 5) and that people must be provided with all necessary
supports to enable them exercise choice and control in their lives. The General Comment
goes on to outline that the right to independent living cannot be realised where there is
obligatory sharing of support, no or limited control over who provides support, lack of
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control over where or with whom one lives and a lack of control over day to day decisions.
The right to support as part of the right to Independent Living and Community Inclusion,
includes the provision that support must be controlled by the person to the extent that the
person wishes, and that people should have the option of custom designing their own service.
In the UK, where individualisation (usually referred to as personalisation) is well developed
Chetty et al (2012, 2) suggest that human rights standards and legal protections must be
locked into the personalisation agenda and that ‘..the broad policy concepts and detailed practice
of personalisation are rooted in, and informed by, human rights: both with regard to the general
approach human rights imply and the underpinning legal framework they provide’. The disability
rights pioneer,Adolph Ratzska (2003)asserts that
There is a clear relationship here between the core aspects of Independent Living and
Individualised Supports, arguably a symbiotic relationship in that one is not possible without
the other.
The idea of IS or personalisation can be envisaged as a prerequisite for citizenship i.e. that in
order to exercise citizenship people must be provided with supports which enable this to
happen. Simon Duffy (2003) one of the early pioneers of personalisation of services and
supports in the UK, embeds the approach within concepts of citizenship. He proposes that
Citizenship encompasses six key elements:
1. Self-determination — the ability to be in control of your life
2. Direction — having a distinct purpose and meaning to your life
‘Independent Living means that we demand the same choices and control in our
every-day lives that our non-disabled brothers and sisters, neighbors and friends take
for granted.We want to grow up in our families, go to the neighborhood school, use
the same bus as our neighbors, work in jobs that are in line with our education and
interests, and start families of our own. Since we are the best experts on our needs,
we need to show the solutions we want, need to be in charge of our lives, think and
speak for ourselves – just as everybody else.’
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3. Money — having enough resources to direct your own life
4. Home — having a place where you belong
5. Support — needing other people, giving value to the lives of others
6. Contribution to community life— giving to others through family and community.
He suggests that in the absence of all or any of these keys, citizenship is denied to people, and
that the only way to achieve them is through self-directed or personalised supports.
Duffy (2010) further developed his ideas into what he terms the Citizenship Theory of Social
Justice, which outlines principles required to achieve a fair society:
• a fair society is one where all its members treat each other with respect, that is, as equal
citizens;
• a fair society ensures that the grounds for respect (the keys to citizenship) are so defined
that everyone can achieve citizenship, and thus be respected as an equal;
• a fair society organises itself so that everyone gets sufficient support to be able to achieve
effective citizenship.
What is innovative about this theory is that it builds from the experience of inequality,
marginalisation and discrimination experienced by disabled people globally and on the
potential of personalised supports to enable equal citizenship, thus creating a fairer society for
all. Although there appears to be merit in the theory, which Duffy refers to as ‘radically
egalitarian’, with its focus on the creation of a fair society where everyone can be treated as
equal citizens, it has been criticised because it ignores the issues of poverty, deep structural
inequality and re-distribution. Focusing purely on individual rights to support, while this is
important, will not create a fair society in the absence of action on and analysis of the
structural issues which lead to poverty, exclusion and inequality. Ferguson (2012, 68) suggests
‘That failure leads, first, to a neglect of the poverty and inequality experienced by many people with
disabilities. … It is hard to see how a theory which seems only concerned with establishing a levelplaying field (and which therefore presupposes the existence of inequality) can in any sense be
described as radically egalitarian.’ While personalised support in itself may be transformative for
individual people with disabilities, it is not likely to be transformative for society.This caution,
along with others, is dealt with in greater detail later in this unit.
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individualised services and social role valorisation
Wolf Wolfensberg’s Social Role Valorisation (SRV) theory and the work of John O’Brien are
also linked to the idea of IS. Wolfensberg’s work focused on the creation of socially valued
roles for people traditionally excluded or marginalised from society, because it is in filling such
roles that people receive respect within the norms of society. His theory suggests that social
roles are important because it is through these roles that people define and situate
themselves in the world and ‘… the roles that people fill affect just about every aspect of their
lives…‘ including, who the person relates to, where and with whom they live, what they do, the
respect they are accorded, their level of autonomy, their participation in the community and
their employment and income status (Wolfensberg 1995, 88). SRV has been adopted as a
guiding principle by many disability services in Ireland and elsewhere and no doubt it has
proven valuable for many people with disabilities. However,SRV is subject to the criticism that
it (or Normalisation as it was originally termed) does nothing to contribute to dismantling the
oppression of disabled people and may in fact be a contributor to such oppression (Oliver
1999, 163).The emphasis on filling ‘normal’ social roles as a route to respect can also be seen
to be a denial of disability (‘abnormal’) identity and difference (see for example Jenkinson 1997
and Peters 1995) and to create pressure on people with disabilities to behave in a ‘normal’
way in order to conform and fit in (Culham and Nind, 2003).
The idea of providing individualised supports says nothing about how people participate in
community or what roles they fill, rather it gives the control over whether and how people
participate with the person. On the other hand, the more people are present in and filling
valued social roles in society,the greater the likelihood that perceptions (and self-perceptions)
will change over time. O’Brien’s five valued experiences acknowledges the importance of
having valued social roles, but goes beyond this to include dignity and respect, relationships,
contribution, making choices and sharing ordinary places as the foundations for a ’good life’
(O’Brien and O’Brien 1988).The role of support agencies is to achieve for its service users
the associated five‘service accomplishments’ and in doing this providing individualised services
and supports appears to be the only genuine route.
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Features of individualised services
The Expert Reference Group (ERG) in their 2010 report on the Review of Disability Policy
identified the following key features of IS:
1. They are determined by the person i.e. they are person centred at all times.The service
is not determined by the service provider or other ‘experts’. Family, advocates or other
people independent of the service provider are an important part of this process. Being
truly person centred gives a clear indication and a clear message that people in receipt of
services are truly valued as contributing citizens irrespective of their circumstances.While
many organisations may claim to be person centred it is important to ascertain to what
degree the person is actually central to all aspects of the service being provided. Kendrick
also warns that harm can in fact be done to people in the process of person centred
planning and the development of individualised services where these processes are
undertaken by people who have not ‘… cultivated in themselves the capacity to enable the
person remain at the center of all thinking’ (Kendrick 2004).
2. They are directed by the person (with their family/advocate as required). It is the person
in receipt of the service who decides its shape and purpose and what changes are needed.
Some people may need support with this and indeed many organisations seek to provide
this in the form of Circles of Support or other means of empowering the person. The
Assisted Decision-Making (Capacity) Act 2015 will have an important role to play in this.
The provision for the appointment by the person of decision-making assistants and codecision makers under the Act will provide a legal basis for people to have support in
making their own decisions including deciding how, where and when support is used to
enable them live lives of their choosing.
3. They are provided on a one-to-one basis to the person and not in group settings – unless
that is the specific choice of the person or a ‘natural’ group activity, such as a team sport.
Ensuring that people have real choice and control over their lives is extremely difficult
where they are obliged to share supports and/or living arrangements.
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4. They are flexible and responsive, adapting to the person’s changing needs and wishes.The
needs and wishes of people change throughout life: what we enjoyed doing as a teenager
is likely to be different to what we enjoy as a middle-aged person; the support we need
as a young child is different in quantity and quality from what we need as we age. These
are self-evident and are equally true for people with disabilities.An additional element for
many disabled people is that the level of personal support required may be higher than
for other people and be required for a longer period. A common experience for many
people with disabilities also is that of being sheltered or segregated from the general
experiences of life and from communities, both by families and by service providers. It is
likely that as people are freed from these constraints and gain more experience of
independent living that what they want will change. How well supports can adapt to these
changes will be a key determinant of the quality of an individualised service.
5. They encompass a wide range of sources and types of support so that very specific needs
and wishes can be met, and they are not limited by what a single service provider can
provide. Traditionally when people entered a disability service (particularly residential
services) all of their needs were provided for by one provider, from medical care to
leisure activities. Indeed, the experience of six people living in one group all having their
hair cut at the same time by the same hair dresser is still not uncommon.And Kendrick
(2004) highlights, even with good will and determination, the incentive to rely on
standardised services is formidable. IS means that people access services and supports
from a variety of places as decided by them. These services may include traditional
disability support services, but they may also include natural supports, general community
services, private or non-for-profit support services and family.
6. They have a high degree of specificity; that is, they are very specific to the person and no
one service is exactly the same as another. Just as each person is unique, so their service
and supports are unique. Although people experience common life events and stages,
such as starting school, having children, retirement and bereavement, how we experience
these are very particular to the individual. A service which is individual to the person
responds not only to the experience or event, but does so in a way that is particular to
the person.The ERG succinctly states that ‘Provision that is expressed in terms of residential,
day or respite does not capture the specific nature of an individual’s support needs’ (2010, 63).
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inDiviDUAliseD FUnDing
An important issue in the provision of IS is that of funding. Who controls the money for
services is a key determinant of who is in control of how the service is delivered. In the UK,
where personalised services are embedded in social care legislation and policy, there are
currently three options open to people eligible for services/supports from their local
authority:
1. Direct payment: the person is paid directly and uses the money to purchase agreed
support services themselves.
2. Indirect Payment: the local authority manages the agreed personal budget for social
support, and commissions services on behalf of the person.
3. Individualised Service Fund: the local authority pays another organisation which provides
support to the person and the person directs how the support is provided.
At first glance, direct payments to the person is perhaps the most straightforward means of
funding, but account must be taken of the willingness and the capacity of the person to manage
such payment. Experience from the UK and elsewhere indicates that the uptake of direct
payments varies. For example, Davey et al (2007) found that people with physical or sensory
disabilities are more likely to take up the direct payments option than people with intellectual
disabilities, older people or people with mental health difficulties.While in Canada Bahadshah
et al (2015) (cited in Flemming 2015) noted a low uptake of individualised funding, citing
reasons including how information was delivered, peer influences, lack of staff training and
associated trickle-down effect of information, fear of isolation, frustration over the amount of
paperwork involved, families’ risk-aversion and fear of losing the security associated with
traditional services.
Individualised budgets for the provision of individualised services along with other means of
individualising services are now taking centre stage in disability policy and practice in many
countries including the United Kingdom, Canada, the United States, and several countries in
Europe.The UK National Audit Office estimated that around 500,000 adults in England were
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is receipt of personal budgets in 2014-15 (National Audit Office, 7).The idea of personalising
services for disabled people in the UK began in earnest with the publication of Personalisation
Through Participation: a new script for public services by Charles Leadbeater in 2004 and the work
of Simon Duffy of In Control founded in 2003. In Control, which was one of the first agencies
to develop and campaign for the development of personalised or self-directed services and
personal budgets, became very influential in government policy. Leadbeater et al (2008, 6)
proposed that personalisation should include not just social care, but that it should also
extend to health, education and taxation. In describing what self-directed services for people
with disabilities would look like he later stated:
This description clearly reflects the work of In Control.The framework of service provision
by In Control included the six key elements required for people to be full citizens, as outlined
above. Duffy proposes that to achieve these elements of citizenship the process involves seven
steps:
1. Self-assessment: people assess their own needs for support and are told how much
money they are entitled to, before developing a support plan
2. Plan support: people develop a plan for their life and for the type of support they need
to implement this, with family or friends, other disabled people, support providers or care
managers
3. Agree the plan: people agree the plan with the funding provider i.e. the local authority
4. Manage the individual budget: the budget in the form of a direct payment is managed by
the person or as close as possible to the person within the agreed terms
Self-directed services put the person at the centre of the action. Professionals help
an individual assess their need and once this is done, the person is given an
indicative budget they can use to design the service solutions that make most
sense to them. People draw up a self-directed support plan with advice from
professionals, peers, family and friends. …. Once the plan is approved by the
authority … the indicative budget becomes real, the money flows to the individual
and then on to the service provider of their choice. Budget-holders can stick with the
status quo and spend their whole budget on traditional, in-house services or at the
other extreme design a bespoke solution, commissioning all services themselves and
employing support staff to help them.
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5. Organise support: people purchase their support from providers of their choice
6. Live life: people get on with living their lives
7. Review and learn: the plan, how it is being implemented, whether it is helping to achieve
the person’s goals and whether it needs changing is reviewed regularly.
Putting People First, the landmark policy for the transformation of adult social care announced
by the UK government in 2007 incorporates these ideas and it specifically mentions In
Control as being at the ‘cutting edge of innovation in adult social care’ (2007, 6). Putting People
First proposed a system-wide change from group-based services to personalised services for
individuals, including the further development of direct payments. This policy was further
rolled out with the Independent Living Strategy launched in 2008 by the Office for Disability
Issues. Direct payments to enable people purchase their own supports/care were first
introduced in the UK under the Community Care (Direct Payments) Act in 1996. This Act
gave local authorities the power to provide direct payments to people in need of support.
This power was enhanced under later legislation with the Health and Social Care Act 2001 so
that the provision of direct payments to people who wanted them and were able to manage
them with or without assistance became mandatory for local authorities. TheWelfare Reform
Act 2009 enshrined a ‘Right to Control’ in legislation thus giving disabled people statutory
power to ‘… exercise greater choice in relation to, and greater control over, the way in which relevant
services are provided to or for them, in cases where the provision of the relevant services is a function
of a relevant authority’ (Part 2, Section 38). Relevant services include among others those which
enable people to live independently or more independently and supports enabling people
overcome barriers to participation in society (Part 2, Section 39(2)) In Scotland the provision
of individualised supports also became firmly embedded in legislation and polciy with the
passage of the Social Care (Self-Directed Support) (Scotland) Act in 2013. Personalisation of
support and direct payments are now at the heart of public policy throughout the UK.
In the early years a number of pilot sites were established for individualised budgets (IB),
which included funds from a number of sources including the Independent Living Fund, the
Access to Work Scheme, the Disabled Facilities Grant, the Supporting People Programme and
Adult Social Care. These pilots were evaluated by the Individual Budgets Evaluation Network
(IBSEN) (Glendinning et al. 2008).The findings were largely positive from the point of view of
IB holders with the evaluation reporting that ‘… we found that the IB group were significantly
more likely to report feeling in control of their daily lives, the support they accessed and how it was
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delivered’ (Glendinning et al. 2008, 20).There were however, significant variations between user
groups availing of IBs with people with mental illness and younger people with physical
disabilities reporting the greatest improvements in quality of life and people with intellectual
disabilities reported feeling a greater sense of control over their lives. Older people were less
likely to report positive changes resulting from holding an IB and in fact reported lower
psychological well-being that the non-IB holders. The positive impact of personal budgets was
re-affirmed by a research scan carried out by the Health Foundation in 2010 which concluded
that ‘International studies suggest that personal budgets can help people feel more empowered and
confident about their care’ (2010, 12).
A 2017 study by Hamilton et al which looked specifically at the experience of adults with
mild/moderate learning disabilities in receipt of personal budgets found that not all
participants aspired towards greater independence, and importantly, that some social support
networks which are important for people’s well-being had been lost with the closure of
specialist services. (Hamilton et at 2017, 288)
The development of direct payments and individualised services have been widely welcomed
by disability activists in the UK as essential supports in enabling people to become more
independent and self-determining in their lives. However, the personalisation agenda has also
been subject to several criticism, and as Ireland has still not made statutory provision for
either direct payments or individualised services we are well positioned to take these
criticisms on board and learn the lessons from the UK.
Quality in individualised services
Individualising a service is not in itself a guarantee of a quality service and it is possible as
Kendrick (2014) suggests to have ‘an institution for one’ in communities.The General Comment
on IL also recognises this stating that any living arrangement whether a large institution, a
small group home or an individual home can not be called IL if it displays any of the features
of institutionalisation. In relation to individualised arrangements these are:
• obligatory sharing of assistants with others and no or limited influence over whom one
has to accept assistance from
• isolation and segregation from independent life within the community
• lack of control over day-to-day decisions
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• lack of choice over whom to live with
• rigidity of routine irrespective of personal will and preferences
• a paternalistic approach in service provision
• supervision of living arrangements
The importance of monitoring and reviewing individualised services against a quality
framework and of having in place systems which support the development and maintenance
of individualised services cannot be overlooked. In Ireland HIQA is responsible for monitoring
residential services for people with disabilities, including situations where people have
individualised supports. However, many people receiving personalised services, particularly
where they are in receipt of direct payments, will be living in their own homes and thus be
outside HIQAs current remit. In the case of the Home Help service, where HSE staff provide
assistance to people, usually older people, in their own homes, this is not regulated
independently – although the HSE has a set of Guidelines and Procedures for Home Care
(HSE 2018) and most private providers of in-home supports adhere to quality standards on a
voluntary basis.
In relation to formal individualisation systems Kendrick (1999) also reminds us that such
systems can in fact be unhelpful to recipients because ‘… the presence of a process, even a wellintentioned one, does not guarantee anything other than its existence. All of these processes are
profoundly dependent on the qualities of the people using them, to say nothing of the wider social
environment or resources.’ Having in place a means of reviewing and monitoring individualised
services as well as the systems to support individualisation of services is paramount.
A literature review covering a 27-year period conducted by Cocks et al (2014) in Australia
concluded that ‘…the empirical base for developing evidence for the nature and outcomes of ISL
(Individualised Supported Living) arrangements was sparse’ (2014, 614). The review uncovered
only nine empirical studies which included an element of ISL. This team developed a quality
framework for Individualised Supported Living incorporating eight themes and associated
attributes:
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themes and Attributes of the individualised supported living Framework
In the UK Paradigm have produced a set of standards for supported living service providers
called Reach: Support for Living an Ordinary Life (2013). The Reach standards can be used
alongside the Care Quality Commission standards.The emphasis of the standards is clearly on
choice and the associated Service Review documents examines the ways in which the agency
facilitates people in achieving each of the eleven standards:
1. I choose who I live with
2. I choose where I live
3. I have my own home
4. I choose how I am supported
5. I choose who supports me
theme
Attributes
leadership
One or more people among the arrangement’s stakeholders
provide leadership based on a clear vision and strong ideas
my Home
The ISL arrangement creates the person’s own home, not just
somewhere to stay
one person at a time
Each arrangement is unique, tailored around the identity of the
individual with a disability
Planning
Planning is comprehensive, embodies person-centred
principles, and includes safeguarding measures
control
Primary control of the arrangement is located with the person
with a disability, and/or those close to him or her
support
A wide range of flexible, formal and informal supports are
tailored around the individual with a disability
thriving
The individual with a disability is seen to be ‘doing well’, with
many aspects of well-being, growth and development enhanced
social inclusion
Each individual with a disability has a rich community life and
social network
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6. I get good support
7. I choose my friends and relationships
8. I choose how to be healthy and safe
9. I have the same rights and responsibilities as other citizens
10. I get help to make changes in my life
One way of looking at how well individualised services are doing and the quality of the service
is through the lens of empowerment; how empowered is the person in his/her life.
Independent Living Research Utilization (2006) in the USA outline a scale of empowerment
which could usefully be used to assess the degree to which people in IS arrangements are in
control over decisions in their life.
levels of empowerment, independent living research Utilization
As the CRPD is where the right to independent living and community inclusion is most
powerfully articulated to a global audience it is perhaps there to which we should turn in
developing standards. In Ireland IS with individualised funding are rare and the statutory
framework for their development is weak or non-existent. Ironically this places us in a good
level 1
Person makes no substantive decisions about his/her service
level 2
Person makes no substantive decisions about his/her service but is
routinely informed about decisions others make on his/her behalf
level 3
People are routinely consulted about their service preferences by the
actual decision-makers.
level 4
People routinely make a significant minority of the substantive
decisions about their personal services; 25% – 45% of key decisions
level 5
People routinely make a significant majority of the substantive
decisions about their personal services; 55% – 90% of key decisions
level 6
People so routinely make the vast majority of key decisions that they
consider themselves to be fully in control of the services and
supports they receive
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position as the evidence for effective personalisation of services will be building
internationally. This will allow us to take the best in standards development from others and
build respectful non-invasive systems and structures for developing and monitoring services.
It will also allow is to learn from the mistakes of others as we set out on this journey. Next
we will look at the criticisms of personalisation, focusing especially on the UK where IS has
become increasingly incorporated into law and policy in adult social care since the 1990s.
critiQUe oF PersonAlisAtion.
The development of personalisation in adult social care in the UK has come under criticisms
on several fronts; in particular that it is primarily a cost saving mechanism; that it promotes
individualism at the expense of the collective good and consequently undermines the welfare
state; that it misconstrues ‘care’ transforming it onto a marketable commodity and that it does
not bode well for the professionalism, quality and status of social care work.
One of the remarkable features of personalisation is its apparent almost universal appeal
across the political spectrum. According to Leadbeater personalisation is simple: ‘by putting
users at the heart of services, enabling them to become participants in the design and delivery,
services will be more effective by mobilising millions of people as co- producers of the public goods
they value’ (2004, 19). And this, as Duffy (2010, 255) highlights, is something which can be
embraced by people with varying political preferences. Indeed, who can be against putting the
users of services at the heart of the design and delivery of their own service? However, this
belies what can be seen as the contradictory roots of personalisation arising from the
Independent Living (IL) movement on the one hand and from campaigners for welfare reform
on the other. Ferguson suggests that ‘… personalisation is best understood as the offspring of two
discourses or ideologies which, while both employing the language of independence, choice and
control, have very different origins and aim’ (2012, 58). He suggests that the language of
personalisation has been appropriated by the neo-liberal agenda from the disability rights/IL
movement
On the one hand, the IL movement strove for the abolition of institutionalisation and the
availability of personal assistance as a means of enabling disabled people to live lives of their
choice. They hailed the initial provision of direct payments in 1996 as a landmark in the
liberation of people with disabilities. In this sense IL ‘… wasn’t about individual selfempowerment; it was about individuals helping one another’ (Campbell and Oliver 1996, 204). On
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the other hand neo-liberal values are about privatisation,marketisation and individualism. The
neo-liberal agenda espoused by consecutive UK governments of all political hues since the
1980s has emphasised the individual as king at the expense of the collective.This viewpoint is
perhaps best epitomised by the famous statement by Margaret Thatcher in 1987 that ‘there is
no such thing as society.There are individual men and women and there are families ….. people must
look after themselves first.’ (Interview in Woman’s Own 1987). Personalisation of social care
has been characterised as ‘enforced individualism’ as opposed to the ‘enforced collectivism’ of
traditional group-based services. (Roulstone and Morgan 2009)The movement away from the
collective values of theWelfare state and collective responsibility for the welfare of all citizens
can be seen as a damage to the public good and as posing particular threats to individual
disabled people.
Part of this is the concern that in personalising (and consequently privatising) services that
risk is also being personalised and privatised. Several commentators suggest that
individualisation of services in social care in reality is a transfer of responsibility for
management of and exposure to risk from the state to the individual (Ferguson, 2007 and
Scourfield 2007).And some people are more able or have access to more resources to guard
against and manage risk than others – either way it raises the issue that in enabling people to
develop and manage their own service, they are implicitly made responsible for managing the
risks. The question arises then as to the appropriate role or responsibility of the state in
safeguarding vulnerable people whose exposure to risk may be heightened by their disability.
Experience from the UK is that safeguarding forms part of the development of individual
support plans for users of personalised services and direct payments and research by Stevens
et al (2018) concluded that social workers and care managers are becoming increasingly aware
of the links between the two. It may be that the concern about enhanced risk exposure is
misplaced because, as highlighted by earlier research by Stevens et al (2014), there was no
strong evidence of higher safeguarding referrals among personalised service users as
compared to all social care service users.The one area where there appears to be increased
risk is in relation to financial abuse. Manthorp and Samsi (2013, 900) highlights that ‘People
with dementia and local authority personal budget systems rely, to a great extent, on the kindness
and honour of both strangers and carers’, and could be seen as at increased risk of financial abuse
as a result. However, their research found that most of the evidence is that people in this
category are not open to increased levels of financial abuse.
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Whether this low safeguarding referral rate hides a different dynamic or different levels of
awareness in personalised services is a topic which requires further research.And the issue
of collective responsibility for safeguarding and of providing for vulnerable people is one which
is still pertinent.The question is whether conceptualising of support as a personalised service
‘… leads into the language of obligations: of individual and family responsibility’ (Clements 2008, 8).
Related to the concern about undermining of the welfare state, is that of the changing
conception of ‘care’ brought about by the personalisation of services and supports. In
personalised services people have control over who supports them, where, when and how.
As described in the General Comment on the right to IL, people exercising the right to IL
must have access to personal assistance where they can contract the service from a variety
of providers or act as an employer themselves (UN 2017, Part II, A, 16 d(ii)). People may
purchase their care/support from whomever they wish and evidence from the UK and
elsewhere is that this has led to the development of a large unregulated private market in care
provision. Suggesting that the personalisation agenda has led to the commodification of care
and support Barnes (2011,163) asks‘… if‘support’is something that can be bought and sold,what
does this mean for our moral sensibilities and our sensitivities concerning the needs of others? And if
the provision of support follows a series of individual commissioning decisions, how does this affect
collective understandings of responsibilities to ensure justice, well-being and citizenship for those who
are vulnerable to discrimination and marginalisation.’ Experience from Italy, Austria and France
demonstrates that those employed as personal assistants in individualised services are
invariably lower paid, less qualified, often immigrant, women who often operate outside of the
strictures of labour and social security regulations (Da Roit et al.2007). Rivas (2003, 73)
referring to personal assistants in the American context, states that ‘… the women who take
these jobs … work in private households, where they are socially isolated, with little potential for
collective voice and few prospects for job mobility.There is no formal training, no career ladder and
no hope for advancement…… Personal attendants rarely receive health benefits, vacation time or sick
leave.They can be fired at will, without notice.’ These findings are confirmed by research by Skills
for Care in the UK which indicated that in 2019/20 there were approximately 105,000 people
carrying out 135,000 jobs as personal assistants funded through Direct Payments.These were
predominantly female with just half having formal health or social care qualifications and the
majority working part-time. In addition, 21% of the workforce were from Black, Asian or
Ethnic minority backgrounds – which is 7% more diverse that the population overall (Skills for
Care 2020).
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Despite the relatively poorer work conditions of personal assistants most report a high level
of job satisfaction. Woolham et al (2019) found even though many personal assistants in
England experience poor working conditions, many also experience considerable job
satisfaction (Woolham et al 2019, 299) This finding is also supported by Shakespeare et al,
2017, and Leece 2010.
This is an issue requiring attention because as Shakespeare suggests ‘It would be deeply
unfortunate if the liberation of disabled people from dependency contributed to the exploitation of
another disempowered section of the population’ (2000, 68).And at a time in Ireland when Social
Care is in the process of professionalisation and regulation, it is clearly an area of concern for
Social Care Workers as it is likely that opportunities to work as qualified social care workers
in any new personalised service environment may be limited. It also raises the question of the
quality of care or support available to users of personalised services; if people working in this
area are generally unqualified and/or have poorer conditions of employment, how can the
quality of care be ensured? Is it possible that traditional group-based services will be more
attractive to qualified staff wishing to pursue a career in Social Care? And could this hinder
the development of personalised services? The General Comment on IL states that Personal
Assistants employment conditions should take account of human rights standards for decent
employment. This is an issue which must be taken seriously by policy developers in order to
protect both the supporters and the supported as IS develop in this country.
Perhaps the most significant criticism of the personalisation of social care in the UK is that it
has been used as a cost saving measure by government. Providing self-directed services based
on personal budgets was predicted to deliver better quality of life for people at a lower cost
to the state (Leadbeater et al 2008).The cost-savings were predicted to be 10% on average,
but as much as 45% in more expensive services (Leadbeater et al 2008, 41). However, the
Social Care Institute for Excellence concluded that ‘There is virtually no reliable evidence on the
long-term social care cost implications for individual budget schemes for the UK. Equally there is no
firm evidence on the actual cost effectiveness of individual budget schemes apart from indications
that they appear to cost less when compared with the monetary value of traditional packages’ (Carr
2009, 15).Work by the Health Research Board which examined the financial sustainability of
individualised budgets in six countries,concluded that there was no evidence base upon which
to make a judgement as to the financial sustainability or otherwise of individual budgets
because this type of service is still in its infancy (Pike et al 2016, 63).
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Experience from the Netherlands indicate that direct payments can be more costly than
traditional services leading the Ministry of Health to stop new applications for them in 2010.
Between 2002 and 2012 the number of personal budget holders increased ten-fold and costs
increased at 23% per year on average during this time – a rate much higher than for those
without personal budgets (Van Ginneken et al 2012, 2).Van Ginneken et al warn that ‘The UK
government must also recognise that personal budgets can create new demand. The Dutch
experience shows that they raise expectations of people who previously were unable to find
appropriate care.This may take some time to become apparent…’ (2012, 3).
Deciding on the amount of a direct payment or a personal budget in social care by definition
involves some form of needs assessment and resource allocation.The purpose of a Resource
Allocation System (RAS) is to provide a clear and rational way to calculate how much money
a person is likely to need to arrange support (ADASS 2010). Local councils who have
responsibility for social care for disabled people in the UK use various models of RAS based
on the Common Framework developed by the Association of Directors of Adult Social
Services. This framework categorises people’s need for support into four bands; critical,
substantial, moderate and low, and bases the amount of money to be allocated to the person
as a direct payment or personal budget on this assessment. The categorisation of need in this
way provides a relatively simple means of imposing budgetary cuts and in 2012, at the height
of the economic crises, 83% of local authorities in England were only funding social care
support to those in the substantial or critical eligibility bands (ADASS 2012). Simon Duffy, who
was an active proponent of the use of RAS as a way of getting ‘…individual budgets into the
hands of disabled people and families..’, apologised for this as he recognised that the RAS was
being used as a means of imposing cuts in budgets (Duffy 2012).
A proposal in 2011 by Birmingham City Council to limit eligibility to people in ‘critical’ need
only and to enhance access to universal services for those excluded was found by the High
Court (Birmingham City Council v W and H CO/1765/2011 and Birmingham City Council v
M, G and H CO/1772/2011) to be wanting in terms of the Council’s equality duty. The
proposal would have seen the withdrawal of support from approximately 5,400 people using
social care support and was made in the context of the need to make large budgetary cuts
across the board.This case highlights one of the underlying vulnerabilities of a system which
is focused primarily on supporting individuals; in order to challenge cuts in services it is
necessary that there be an individual or individuals willing and able to challenge these
decisions in court. The many barriers faced by people with disabilities and especially people
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with intellectual disabilities, in securing access to the justice system means that this is
extremely problematic. As highlighted by Demos commenting on budgetary cutbacks people
in their survey ‘… were encountering several negative impacts simultaneously – they were trying to
cope with personal budget reductions or restrictions, increased user charges, restricted eligibility and
service closure all at the same time’ (Wood, C et al 2011, 12).This issue was considered by the
CRPD committee on foot of complaints received that there was systematic violation of the
right to IL in the UK resulting from austerity measures. In October 2016 the committee found
that these measures were regressive and,in many cases,reinforced the dependency of disabled
people on informal and/or family care and had hindered deinstitutionalisation plans. Their
report found that there was reliable evidence that the UK government measures had met the
threshold of grave or systematic violations of the rights of people with disabilities. (UN CRPD
Committee (2016).The Committee findings were rejected by the UK government.
While people who are being supported in grouped settings, there is at least the potential for
group action, even if this rarely happens. Where people are dispersed in the community
without access to an effective advocacy system the problem of challenging system changes
impacting on individuals is greater. The collective voice of people with intellectual disabilities
and their advocates is, therefore, potentially undermined by the individualisation of services.
While this is not an insurmountable problem it does require the deliberate building of
collective advocacy structures of disabled people, families and advocates.
Jenny Morris, a leading campaigner for disability rights in the UK summarises the problem with
the current system of personalised services as follows: ‘Local authority social services
departments remain in control over how people access support. For all the rhetoric about
‘personalisation’ and ‘choice and control’, the process of getting a personal budget or direct payment
is usually dominated by complicated procedures devised by the local authority because they fear risk,
mistakes and fraud.And because all too often people working in statutory, and some voluntary sector,
organisations think that they know best. Access to support has always been dominated by the
rationing of scarce resources and this is getting worse but is too often masked by the rhetoric of
personalisation’ (Morris 2014).
situation in ireland
In Ireland there is currently no statutory framework for the provision of personal
funding/direct payments. The state is the primary funder of voluntary and HSE-run disability
services, allocating €1.904 million in 2019 (HRB 2020, 1).The NDA indicated that in 2009 the
largest 40 disability providers received 90% of the total funding (NDA 2010, 76), while the
Transforming Lives programme reported in 2016 that the five largest providers received 33%
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of the total disability spend (HSE 2016, 22).The most relevant statistics in relation to disabled
people and IL in Ireland are those compiled by the Health Research Board annually. The
National Intellectual Disability Database (NIDD) Committee Annual Reports define
‘independent/semi-independent’ settings as people living in their own home with a maximum
of 2 hours residential support daily or no support.And while this is a very limited definition,
the statistics give some indication of the extent of IL among the population of people with
intellectual disability registered on the database. The NIDD Annual Report 2017 indicates that
1,223 people were living in ‘independent/semi-independent’ settings. (HRB 2018).This is just
under 14% of the total number of people in receipt of residential services. Eleven years
previously, in 2006, the number of people in ‘independent/semi-independent’ settings was 850
or 10% of the total number of people in residential care (HRB 2007).
In 2019 the Health Research Board began combining statistics from the National Intellectual
Disability Database and the National Physical and Sensory Disability Database. This new
database is called the National Ability Supports System (NASS) and its first bulletin was
published in 2020.The bulletin records the number of people using Supports for Daily Living
which are ‘… services and supports that enable a person with a disability to live more independently
and participate more effectively in the community.’ (HRB 2020, 18) Of those in receipt of
supports for daily living, 73% had an intellectual disability. The bulletin indicated that 1,314
people were in receipt of home supports to enable the person to live in their own home and
a further 569 people were using the services of Personal Assistants. (HRB 2020, 19)
The number of people in independent living/semi-independent living is increasing both in real
terms and in percentage terms. However, progress is slow and it is confined to those with
low support needs. The annual report of the National Physical and Sensory Database
(NPSDD)committee 2017 indicates that 1,520 people were using some form of personal
assistance service; mainly home help, personal assistance and peer support (HRB 2018). It
should be noted that the NPSDD does not record service usage or service needs of people
who acquire a disability after the age of 65 years. Nonetheless, the figure for the use of
personal assistance appears to be very low, and as a key part of the IL or individualised
services, this is worrying.
Many traditional service providers throughout the country attempt to personalise services
and supports for particular individuals from within the overall organisational budget. (See for
example the Person-CentredWing of the Muiriosa Foundation)There are also a small number
of newer organisations established specifically to provide self-directed services, such as
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Possibilities Plus. Organisations such as Possibilities Plus work with people who have
individual funding allocated to them or have resources of their own, in effect operating as a
service broker and supporter in the management of the service. The larger agencies as a
general rule receive block grants based on the requirement to provide a given quantum of
residential, day and other services. They may also receive some funding earmarked for a
particular individual, particularly in relation to school leavers.
In this context while it may be possible for the large agencies to individualise services and
supports, it is extremely difficult for them to extract funding from the overall budget to
individualise the funding. The ‘unbundling’ of funding from group-based services, especially
residential services, is fraught with difficulties. For example, a staffed group home
accommodating five or six people with moderate support needs costs a considerable amount.
Exact figures are not available for Ireland but a study published by the European Network for
Independent Living in 2014 indicated that the cost of providing residential care ranged from
€90,000 per person per year in France through €48,000 in Italy to €3,500 in Bulgaria (ENIL
2014). Presumably Ireland lies somewhere along this continuum. If one of the people living in
this group home is to be provided with an individualised service and individualised funding, this
must be extracted from the budget for the house. And as a majority of the funding will be
associated with staff costs, this presents an obstacle. In effect, the agency must find additional
funding to provide a personalised service and funding to the one individual, and to maximise
cost-efficiencies must ‘back fill’ the vacated place in the group home.
In 2016 the Minister of State for Disabilities established the Task Force on Personalised
Budgets to give effect to a commitment given in the Programme for Partnership Government.
The function of the Task Force was to make recommendations to government on a costneutral approach to a personalised budget model which would provide individuals with
disabilities more control and choice in accessing health funded personal social services. The
Task Force issued its report in June 2018 recommending that a personalised budget model
should follow a particular process:
before: Assessment of Support Needs using a standardised assessment process and resource
allocation tool as part of which people would identify their needs and desired outcomes.This
would form the basis of an indicative budget.
stage 1: Information to be provided on support options whereby the person could decide
whether a personalised budget would be suitable for them.
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stage 2: Application – the person applies for a personalised budget and develops a Personal
Support Plan including the funding and supports available.
stage 3: Support and Planning – queries and three payment options discussed i.e. the Person
Managed Fund, Co-Managed with Service Provider and Broker Managed
stage 4: Implementation and Review – the person decides on their preferred funding option
and finalises their support plan
stage 5: Review and Governance – of the personal support plan, the person’s experience of
the personalised budget, the outcomes achieved and financial review.
The Task Force recommended that a national framework for Personalised Budgets be
developed and that a number of demonstration projects be established to test different
payment options, the costs involved, quality assurance, employment issues and financial
sustainability. In 2019 a pilot scheme was launched by the HSE which will see 180 people avail
of personalised budget.The results of this project should inform the further development of
personalised services in this country. For information on the personalised budget pilot scheme
see https://www.hse.ie/eng/services/list/4/disability/personalised-budgets-for-people-with-adisability/
sUmmArY
There are a variety of terms used to describe Individualised Services and Supports and in this
Unit we began by looking at its core features and its relationship to the human rights of
people with disabilities.This issue of funding for Individualised Services was explored including
the challenges for disability services which are block funded and direct payments to disabled
people to design and manage their own service.The evolution of self-directed services in UK
policy and legislation was discussed and the question of ensuring quality in services where the
state is at arm’s length from service delivery and management. Finally, although the idea of selfdirected individualised services has received a broad welcome across the political spectrum,
it is not without its critics, particularly in relation to potential safeguarding issues, the
privatisation of care and the wider implications for the welfare state.

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