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Self-Directed Support and Gypsy/Travellers
MECOPP (Minority Ethnic Carers of People Project)
February 2015
ii
Contents
1. MECOPP GYPSY/TRAVELLER CARERS’ PROJECT 3
2. WHY IS THIS RESEARCH IMPORTANT? 4
3. HOW DID WE DO IT? 8
4. WHAT APPETITE IS THERE FOR SDS? 11
5. WHAT ARE THE BARRIERS TO SDS? 14
6. HOW MIGHT GYPSY/TRAVELLERS USE SDS BUDGETS? 20
7. WHAT WOULD HELP TO ENABLE TAKE-UP OF SDS? 24
8. IF SDS IS THE ANSWER, WHAT IS THE QUESTION? 26
9. NEXT STEPS 27
10. CASE STUDIES 30
Acknowledgments
Carers Trust North Argyll Carers Centre
Pat Price Friends, Families and Travellers
Elaine Black and SDS team at Scottish Government Carr Gomm Community Contacts team
Gypsy/Traveller community members and MECOPP staff
3
1. MECOPP Gypsy/Traveller Carers’ Project
MECOPP (Minority Ethnic Carers of People Project) is Scotland’s leading Black and Minority Ethnic (BME)
carers’ organisation providing a variety of care and support services to carers, and people being cared for,
from a range of BME communities.
In 2011, MECOPP began working with Gypsy/Travellers in three localities of Scotland: Edinburgh and the
Lothians, Perth and Kinross, and mid and north Argyll. Using community development approaches, the
project works to: raise awareness of informal caring within the community; develop and deliver a range of
services to support families; build capacity of statutory bodies to respond more appropriately to identified
need; and, assist local and Scottish national government in the development of policy and practice. In
2013, MECOPP was awarded funding from the Scottish Government’s Self-Directed Support Unit to
explore the potential of Self-Directed Support in meeting the care and support needs of Gypsy/Travellers.
The project follows the 2012 Scottish Parliament Equal Opportunities Committee inquiry into the care
needs of Gypsy/Travellers in Scotland, which found Gypsy/Travellers’ experiences of health and social care
to be “appalling”, “concerning” and “alarming”.1 During the inquiry, it was suggested that Self-Directed
Support (SDS) - the new approach to providing social care services in Scotland in which individuals direct
the delivery of their support packages – could provide a way of offering greater flexibility for
Gypsy/Travellers accessing social care services.
The two-year funded project was split into two phases: the first, a research phase to explore what appetite
exists for SDS and to identify the support mechanisms required to enable uptake of SDS within the
community; the second, to implement the recommendations borne from the first phase.
Drawing on community-based approaches, the aims of the research phase were to establish:
Current levels of awareness of SDS;
‘Appetite’ for take-up of SDS;
Potential barriers which may prevent uptake; and
Support mechanisms required to enable uptake.
1 http://www.scottish.parliament.uk/parliamentarybusiness/CurrentCommittees/54885.aspx
4
Structured around these key aims, this report details the findings of the research, drawing on community
members’ experiences to illustrate the landscape surrounding SDS and Gypsy/Travellers.
It is important to emphasise at the very beginning that Gypsy/Travellers are not a homogenous group and
that support needs among the community vary from person to person. Those involved in the research have
been careful to point out that they “do not speak for all Gypsy/Travellers”. This report aims to highlight
some of the shared experiences of Gypsy/Travellers and address the challenges that many have faced,
and continue to face, when accessing support services.
2. Why is this research important?
“Gypsy/Travellers are one of the most marginalised, vulnerable and socially excluded populations
in the UK today”.2
2.1 Health and wellbeing of Gypsy/Travellers
When considering the support needs of Gypsy/Traveller carers, it is important to understand the
environment in which they live and the challenges that they face in their daily lives. Underpinning their
ability to access support services are daily struggles with inadequate accommodation and poor health.
Available statistics show a clear disparity between the health of Gypsy/Travellers and the wider British
public:
A report published in 2004 showed Gypsy/Travellers are the most at-risk health group in the UK with
the lowest life expectancy and the highest child mortality rate.3
In 2009 an Equality and Human Rights Commission report found that Gypsy/Travellers have worse
health than others: “38% of a sample of 260 Gypsies and Travellers had a long-term illness,
compared with 26% of age and sex-matched comparators”.4
2 Commission for Racial Equality, 2006, Common Ground: Equality, good race relations and sites for Gypsies and Irish Travellers
3 Parry, G., Van Cleemput, P., Peters, J., Moore, J., Walters, S., Thomas, K. and Cooper, C., 2004, The Health Status of Gypsies &
Travellers in England, The University of Sheffield 4 Cemlyn, S, Greenfields, M, Burnett S, Matthews, Z and Whitwell, C., 2009, Inequalities experienced by Gypsy and Traveller
Communities: A Review
5
In Ireland, life expectancy for Gypsy/Traveller men is 15 years lower than men in the general
population. For women, it is 11 years lower. In the recent Scottish Parliament Equal Opportunities
Committee inquiry into Gypsy/Travellers and Care, one witness, a retired GP, put the life
expectancy of Scottish Gypsy/Travellers as low as 55 for men.5
One of the biggest factors in this disparity is a lack of secure and appropriate accommodation, which can
have a profound impact on health and wellbeing. Thomas Hammarberg, the Council of Europe
Commissioner for Human Rights, recognised this when he called on the UK government to “uphold [the
right of Gypsy/Travellers to adequate housing] which is a pre-condition for the enjoyment of other human
rights”.6
Local authority-run sites are often on unsuitable land, e.g. near refuse dumps, industrial sites, or busy
roads with poor resources available to residents. The substandard accommodation found by the Scottish
Parliament Equal Opportunities Committee in 2013 led to a damning report detailing the “horrendous
conditions that families, including infants, older people and disabled people, have to live with”.7
Many Gypsy/Travellers, including some of those involved in this research, also live in bricks and mortar
housing – the Commission for Racial Equality identified between 270,000 and 360,000 across the UK in
2006 – often due to ill health or a lack of available sites.8 However, studies have shown that those living in
houses suffer poorer health:
The 2011 Equally Connected project found that the “pressures of living in a house”9 had a major
impact on the mental wellbeing of Gypsy/Travellers, with loneliness and isolation characterising
experiences of living in housing.
Similarly, a 2004 study by the University of Sheffield found that those living in houses suffered
greater anxiety than those who continued to travel, and found that “accommodation was the
overriding factor mentioned by every respondent in the context of health effects”.10
5 Scottish Parliament Equal Opportunities Committee, 2012, Gypsy/Travellers and Care
6 Open letter to Secretary of State for Communities and Local Government, 13 February 2012
7 Scottish Parliament Equal Opportunities Committee Inquiry, 2013, Where Gypsy/Travellers Live
8 Commission for Racial Equality, 2006, Common Ground: Equality, good race relations and sites for Gypsies and Irish Travellers
9 Lloyd, M., 2011, Equally Connected Report 7, Working with Gypsy/Travellers
10 Parry, G., Van Cleemput, P., Peters, J., Moore, J., Walters, S., Thomas, K. and Cooper, C., 2004, The Health Status of Gypsies &
Travellers in England, The University of Sheffield
6
The health and wellbeing of Gypsy/Travellers is linked inextricably to their accommodation needs and it is
important to bear this in mind when considering the barriers to accessing health and social care services.
2.2 Caring within Gypsy/Traveller communities
According to the latest figures from the National Census for England and Wales, Gypsy/Travellers are the
highest providers of unpaid care, providing 50 hours or more. Emerging census figures for Scotland show a
similar picture: 28% of Gypsy/Travellers are limited by a long-term health problem or disability, compared to
20% of All People, with 10% of the Gypsy/Traveller population providing unpaid care, compared with 6.9%
of All People.
Little research has been carried out with Gypsy/Traveller carers, with the Scottish Government
acknowledging in its 2010-2015 Carers Strategy, that “there are groups of carers we know little about, such
as carers with disabilities, gypsy travellers [sic] and refugees and we should address this lack of
knowledge”.11
MECOPP’s early research into the experiences of Gypsy/Traveller carers found that access to social care
services is “at best problematic, at worst non-existent”.12 The majority of carers are not accessing social
services, with awareness about their rights and services available to them very low, and a lack of trust
characterising relations with social care workers. There is a tendency for carers to ‘muddle through’13,
perhaps linked to a sense of fatalism and stoicism found in some Gypsy/Traveller communities.14
The Equal Opportunities Committee (EOC) also found a lack of cultural competency amongst service
providers to be a major barrier in ensuring that carers receive the support they need: “It is clear to us that
one of the greatest barriers to supporting Gypsy/Travellers … is a lack of understanding about their
lifestyle, population and travelling patterns”.15 Similarly, MECOPP’s research found that care services are
“often ill-suited to the cohesive and private nature of the Gypsy/Traveller community”.16
11 Scottish Government, Caring Together: The Carers Strategy 2010-2015
12 MECOPP, 2012, Hidden Carers, Unheard Voices: Informal Caring within the Gypsy/Traveller Community in Scotland
13 Ibid.
14 Lloyd, M., 2011, Equally Connected Report 7, Working with Gypsy/Travellers
15 Scottish Parliament Equal Opportunities Committee, 2012, Gypsy/Travellers and Care
16 MECOPP, 2012, Hidden Carers, Unheard Voices: Informal Caring within the Gypsy/Traveller Community in Scotland
7
Given the issues identified by MECOPP, and supported by the EOC inquiry findings, it would seem that
there is a role for SDS to play in providing support services that are culturally appropriate and better suited
to the needs of Gypsy/Travellers and their carers.
2.3 Self-Directed Support
“SDS clients retained a sense of their own identity and place in the world that reaffirmed their self-worth”.17
In 2010, the Scottish Government and COSLA published a Self-Directed Support Strategy for Scotland.
Sitting alongside the 2010-2015 Carers Strategy for Scotland, and a wider reform agenda, the aim of the
strategy is to give people greater control over the support services they receive. The Social Care (Self-
Directed Support) Bill was passed by the Scottish Parliament in November 2012 and received Royal Assent
in January 2013. The Act came into force on 1st April 2014, halfway through the research period.
Reflecting a shift towards the personalisation of care, SDS allows individuals to arrange all or some of their
own support, rather than receiving services arranged by their local authority. The four options for SDS
include: receiving direct payments; the person directs the available support; the local authority arranges the
support; or a mix of the first three options. The emphasis, therefore, is on the co-production of support
packages, with individuals taking a more active role in selecting and shaping the services they receive.
With the focus on giving people control and choice over the services they receive, SDS has the potential to
offer Gypsy/Travellers, and other minority ethnic groups, a way of accessing support that is culturally
appropriate.18 Similarly, a report into the health and social care needs of Gypsy/Travellers in West Sussex
recognises the potential SDS has to offer Gypsy/Traveller communities, but cautions that it “needs time to
build trust and develop an awareness of how it could work positively for their families”.19
Very few of the Gypsy/Travellers involved in our research were accessing social care services and only one
or two had heard about SDS. This supports a finding from a review of SDS that found that awareness
depended on how involved a person already was with social care services.20 Part of the research process,
17 Scottish Government, 2008, A Review of Self-Directed Support in Scotland
18 A joint Age Concern/Help the Aged report also recognises the potential of SDS to help Gypsy/Travellers “commission their own
services which would be culturally appropriate and could be provided by people from within the community” 19
West Sussex Local Involvement Network, 2010. Health and Social Care needs of Gypsy and Traveller families and communities in West Sussex 20
Scottish Government, 2008, A Review of Self-Directed Support in Scotland
8
then, was to raise awareness of SDS among the Gypsy/Traveller communities MECOPP works with and to
explore what appetite exists for it.
While a review of SDS in Scotland found that the majority of clients felt positive about the impact SDS has
had on the quality of their care and support, it also found that they required “sheer effort and perseverance”
to set up the support they needed, with clients reporting having to resort to “persistent challenging” to direct
their own support, and describing their experiences as a “continual battle”.21
This review, together with a recent report by Audit Scotland, also found inconsistencies in the way that SDS
is implemented across local authorities, with ‘patchy’ training of social workers.22
3. How did we do it?
Given that many of those involved in the research were dealing with a multitude of personal challenges –
some of which will be addressed in this report - a flexible approach to the research methodology was taken.
The aim was to carry out research in a way that was collaborative and not burdensome for community
members.
21 Ibid.
22 Ibid.
3.1 Identifying participants
Approximately 40 research participants were identified with support from MECOPP Development Workers
in each of the three local areas. Introductions were made to those with whom MECOPP staff had
developed good relationships, with some Gypsy/Travellers also helping to facilitate introductions to other
community members. A postcard was designed with the researcher’s contact details, which also distributed
to people during site visits as a way of raising awareness of the project.
The time it took to get to know community members should not be underestimated. One participant only felt
able to share her struggles with caring after several months, despite having spoken to the researcher on
numerous visits, and despite already being supported by a support worker from another organisation.
9
The majority of the community members involved in this research are carers and most live on local
authority sites with a smaller number living in houses. Most research participants were women. The
research also found several ‘hidden carers’, i.e. individuals who had not previously considered themselves
to be carers, and therefore eligible for support, including one woman who was struggling to care for her
partner who has substance misuse problems.
3.2 Gypsy/Travellers
3.2a Interviews
Interviews with community members across the three areas formed the bulk of the research. These were a
combination of informal and semi-formal interviews, the majority of which were on a one-to-one basis, in
people’s homes, to ensure that the research was not too onerous and to avoid adding to the ‘consultation
fatigue’ that currently exists in the community.
In addition, six interviews were also conducted in Perth and Kinross with carers to feed into the Council’s
new Carer’s Strategy. Similarly, two interviews were also conducted for the City of Edinburgh Council’s
carer’s consultation.
3.2b Informal engagement
Every opportunity to engage with community members was used to talk about SDS. The researcher
attended a number of wellbeing events, training sessions, and ‘Get Togethers’ during the research period.
These were all valuable opportunities to build trust and talk informally about SDS.
3.2c Community conversation
A Community Conversation on SDS was held with a group of nine Gypsy/Travellers during a residential
event, which involved a series of drama workshops and discussions around mental health. This was felt to
be an effective methodology in a relaxed setting, where the focus was on promoting positive health and
wellbeing.
The Conversation began with a very brief introduction to SDS. As the majority of those who attended are
not in receipt of social care services, it was felt the introduction needed to be as simple and jargon-free as
possible. A short video clip, downloaded from the Self-Directed Support Scotland website, showing how
one woman in Fife is using SDS to help her attend a university course, was shown to the group. This was
10
well received and helped to spark a discussion as to how SDS can be used to meet different support
needs. A ‘true or false’ quiz was then distributed to participants who worked through the questions in pairs.
This was intended as a light-hearted way of introducing SDS, as well as debunking some of the myths.
Two case studies exploring scenarios facing Gypsy/Traveller carers had been prepared as a way of
sparking discussion about how SDS could be used. However, a group discussion about SDS began
organically and it was felt that this would be more informative than going through the case studies. At that
time one participant was beginning the process to access direct payments, and was able to share some of
her experiences in doing so, which generated further discussion.
3.3 Service providers
3.3a Meetings with service providers
Meetings were held with a variety of service providers, including all SDS leads in local authority areas
covered by the project, as a way of raising awareness about the project and to gather information about the
knowledge and attitudes that exist about the needs of Gypsy/Travellers.
There was a disappointing lack of engagement from some service providers in the research. Some were
slow to respond to requests for meetings, requiring several attempts to follow up, and there has been little
engagement with activities involving Gypsy/Travellers.
For example, in one area, it took five emails to arrange a short introductory meeting with a key contact in an
area with a high population of Gypsy/Travellers. In a previous meeting, the service provider had spoken
about the struggle to engage with Gypsy/Travellers so, over a one year period, MECOPP invited her to
attend various activities organised by MECOPP and community members, including a training session and
wellbeing events, to which we received no response.
3.3b Surveys
Two online surveys were distributed early on in the research to all SDS leads across Scotland, and all
partners of the Carers Trust network, as a way of identifying what the landscape is regarding SDS and
Gypsy/Travellers. Responses to both surveys were poor (only nine SDS leads, and five carers centres,
responded) but did give some indication of what issues are of concern to service providers in helping
Gypsy/Travellers to direct their own support (see Box 1 on page 19 for example).
11
3.3c SDS conference
Together with Lothian Centre for Inclusive Living, we held a national conference exploring issues around
SDS and BME communities. As part of the conference, MECOPP’s two SDS Development Workers ran a
workshop on Making Information Accessible, in which we presented some of the research findings so far.
Using an anonymised case study the group discussed some of the barriers faced by the Gypsy/Traveller,
including inaccessible information and a lack of trust in social work, and considered how the individual in
the case study could be helped to direct his own support. Feedback from the group was positive, with
comments such as, “I now realise I’ve been ignoring an entire community”.
In addition to the workshop, we also displayed the Moving Minds exhibition of Gypsy/Traveller ‘stories’, as a
way of helping to raise awareness of some of the issues facing carers within the community.23
3.3d Good practice
An additional research aim was to identify good practice examples of service providers working with
Gypsy/Travellers to direct their own support. In addition to making contacts in Scotland, we also looked
elsewhere in the UK. However, it proved to be difficult to find instances of good practice with only one
example being put forward by Friends, Families and Travellers, highlighted on page 21 of this report.
4. What appetite is there for SDS?
One of the aims of the research was to identify what appetite exists for SDS among the Gypsy/Traveller
community.
Service providers often speak of SDS as representing a ‘cultural shift’ and a ‘new way of offering social
care support’. However, conveying this change to the community was a challenge, given that very few were
accessing services and therefore had little experience or knowledge of the delivery of social care.
23 http://www.mecopp.org.uk/resources-moving_minds_book.php?section_id=346
12
When the general principles of SDS were explained to community members, there was unanimous support.
All participants agreed that SDS was “a good thing” and “that is the way it should be”, and some identified
ways in which they could use an SDS budget to meet their individual outcomes. However, when asked
whether they would consider accessing SDS, a number of reasons were provided as to why they did not
feel able to.
While there is clearly an appetite for SDS among Gypsy/Travellers, the research uncovered a number of
ways in which this is suppressed.
4.1 ‘Not a priority’
Although interested in SDS, many participants felt that they had too much going on in their lives and that
accessing SDS would simply be ‘too much hassle’. Whilst acknowledging the potential benefits of SDS,
many participants were dealing with issues around accommodation and discrimination and tackling these
was by far a more urgent priority for them.
Almost all of the participants in the research cited problems with their accommodation. Those living on sites
spoke of waiting years for repairs, dealing with anti-social behaviour, and the struggle to get the necessary
adaptations made to homes. Such problems were also highlighted in the Where Gypsy/Travellers Live
inquiry, which found “shocking standards of living”, adding, “When we visited sites we saw some
horrendous conditions for ourselves”.24
One carer, who expressed an initial interest in SDS, later felt that she did not have the time or energy to
think about accessing it. An average week sees her taking her mother to hospital appointments, writing
letters, making phone calls, and attending meetings with the Council, on top of doing the cooking, cleaning,
shopping, and personal care for her mother. While she acknowledges that SDS could help her in her caring
role, dealing with all these other tasks takes priority and she would prefer support with that: “What would
really help me right now is independent advocacy”.
During the research, participants regularly asked for assistance with benefits advice, writing letters of
complaint to local Councils, tackling discrimination, finding employment, as these were the issues that they
felt they needed most help with.
24 Scottish Parliament Equal Opportunities Committee, 2013, Where Gypsy/Travellers Live
13
4.2 ‘Nothing will happen’
Linked to the sense of SDS being ‘too much hassle’, there was also a sense of fatalism among many
participants, with a feeling that nothing would happen even if they did try to access it.
Much of this was related to the accommodation problems that participants faced, many of which have been
rumbling on for years. The fact that many of these problems could be fixed quickly, e.g. simple repairs to
fencing or roads, only adds to the sense of frustration. Participants often commented that the work could be
done quicker by themselves, if they had the permission to do so. In such situations, it is difficult to persuade
anyone that SDS might bring positive change.
There was a real sense of ‘consultation fatigue’ during the research, with participants in one local authority
area involved in three separate consultations, as well as the Equal Opportunities Committee inquiries, and
a more recent inquiry by the British-Irish Parliamentary Assembly (BIPA). As one community member
participating in the BIPA review put it, “What’s the point in having another inquiry when nothing’s happened
from the last one?” Again, this lack of visible action adds to the pessimism about the benefits of accessing
social care services. All participants felt that they had been discriminated against because of their ethnicity
at one point or another.
4.3 Lack of positive stories
There is an array of stories circulating of how people have used their SDS budgets creatively. Stories of
people using their money to go skydiving, skiing, and bungee jumping have been recounted at various
conferences. However, what is missing for the Gypsy/Traveller community are positive examples of how
people in their own community have used SDS to improve their day-to-day lives. One participant was
interested in SDS but did not want to be the ‘guinea pig’, saying, “show me it working for someone else and
I’ll think about it”. Another participant was put off SDS having heard about a woman in the settled
community who had struggled with the paperwork involved in managing direct payments.
During the Community Conversation one participant, who at the time was making steps towards accessing
SDS, shared some of her experiences. Although much of her experience was negative – “They do try to
talk you out of it – they come up with so many rules and regulations to put you off” – she also shared her
positive experience of coming across a sympathetic social worker who helped to encourage her to pursue
it. The others responded well to hearing about her experiences and that seemed to spark more interest in
14
SDS. “It’s good to hear that it’s going to work for someone”. To ‘whet the appetite’ for SDS, and encourage
others to pursue accessing SDS, similar positive stories of how Gypsy/Travellers are directing their own
support are needed.
While there is interest in, and an appetite for, SDS, a lot of work needs to be done before people will feel
confident accessing it. Positive stories of SDS working well for community members, and better
engagement on behalf of local Councils, would go a long way to encouraging uptake of SDS.
5. What are the barriers to accessing SDS?
Where there is an appetite for SDS, the research identified a number of barriers that can prevent
Gypsy/Travellers from accessing it.
5.1 Lack of cultural competency
“We are extremely frustrated to have heard repeatedly that the settled community, local authorities and
service providers tend towards making negative assumptions about Gypsy/Travellers' needs”.25
25 Scottish Parliament Equal Opportunities Committee, 2012, Gypsy/Travellers and Care
15
One of the biggest barriers preventing Gypsy/Travellers from accessing SDS concerns the attitudes of
service providers. Throughout the research, meetings have been held with staff, from both the statutory and
voluntary sectors, and discriminatory remarks were frequently repeated. For example, at the start of the
research project, one employee of a SDS support organisation told the researcher that she would need to
“toughen up” if she was to work with Gypsy/Travellers, as “they are often hostile”. This notion of hostility
was repeated at subsequent meetings with social workers. Almost all meetings started with the phrase, “I
don’t know much about Travellers” before sharing thoughts as to what the ‘problem’ is.
There seemed to be a consensus that there is a lack of trust between Gypsy/Travellers and local Councils.
However, there was a tendency among service providers to put the blame for this onto the community: the
phrase “they don’t engage” was heard numerous times, as was the phrase, “they’re hard-to-reach”.
Very few service providers were engaging with Gypsy/Travellers – or at least did not know if they were.
One or two suggested that this was “despite our efforts” though did not elaborate on what these efforts
were or when they were made.
There was a real lack of understanding of Gypsy/Traveller culture among service providers, with
Gypsy/Travellers only recognised as such if they are constantly on the move. This is evidenced by
responses to the online survey, see Box 1 on page 19. One SDS lead said at the first meeting, ‘We don’t
have any real Travellers here’, and talk of ‘ex-Travellers’, was repeated by others on various occasions.
5.2 Lack of accessible information
“I never knew there was help out there”.26
Very few of the community members involved in the research had heard about SDS, even those who are
generally well informed about new policy or legal developments. Information materials are generally not
accessible to the Gypsy/Traveller community, where literacy levels are often low, and what information is
there does not seem to reach community members.
26 Community Member, 2013
16
For information to be accessible, it first needs to be available. None of the research participants had
received information about SDS, or support services in general, nor did they know where to go to get it.
Some community members living on sites are further isolated by the lack of a landline and/or internet
connections. When asked about how they find out information about what support is available, the common
response was, “through MECOPP” or “doctor surgeries”.
When information is available, the jargon associated with SDS presents another barrier. This is an issue for
anyone, regardless of ethnic identity – for example during a carers’ conference, attendees spoke of feeling
overwhelmed by jargon such as, ‘Resource Allocation System’, following a presentation on SDS. However,
it presents even more of a barrier to communities where the majority are not accessing social care services
and much of the language used is unfamiliar to them.
For example, during the Community Conversation, one Gypsy/Traveller asked what was meant by
‘support’: having never accessed services before, the concept was new to her. Accordingly, much of the
research involved simply speaking to community members about what support might look like and
spreading the SDS message of ‘choice and control’.
Almost everyone, regardless of literacy skill, expressed their preference to receive information through
face-to-face discussions. That is not to say that written information is redundant entirely; rather it is most
effective when supported by face-to-face discussions.
In addition to an absence of accessible information, there is also an issue about being able to access the
right information. Two carers who had previously expressed an interest in accessing direct payments had
been “put off”: one because she was told incorrectly that she could not use the money to employ family
members, and another because she was told there would be too much paperwork involved. Both of these
carers could now be directing their own support if they had received the correct information, and support, at
the time of asking.
Despite workforce training on SDS, our evidence suggests there is still a great deal of misinformation. For
example, one social worker said during a recent assessment that direct payments could not be used to
employ relatives, while another incorrectly advised, “Carers can only get SDS if they can’t do their caring
role and need someone else to come in and do it for them”. When told in response that this was incorrect,
she added, “SDS is all very new; I’m not sure what they will accept”.
17
5.3 Lack of trust in councils
“If you don’t have trust in your local authority, then you’re really going to struggle”.27
Another issue that was commonly raised concerns a lack of trust in local Councils with many participants
commenting, “it’s like hitting your head against a brick wall”. Almost all participants, regardless of area,
spoke of being in a ‘battle’ with their local Council. Again, much of this stems from accommodation issues,
which they feel their Councils do nothing about.
Several community members spoke about having ‘fights’ with their local Councils to get basic adaptations
done to their homes. One person who is a wheelchair user waited years to have a lift installed in her home
so that she did not have to rely on family members to carry her in and out. “It was only when I got involved
with the Equal Opportunities Committee inquiry that they suddenly came out and put it in”.
Another person who is a carer for her elderly mother spoke of fighting her local Council to have the
bathroom adapted, saying, “I never realised that being a carer meant taking on the Council”.
Another carer spoke of her exhaustion at trying to get a static caravan put onto the site she lives on for her
elderly father who is no longer able to live independently in his mobile caravan. Indeed the Scottish
Parliament Equal Opportunities Committee was “horrified to hear of the various delays experienced by
Gypsy/Travellers in securing necessary adaptations”.28
There was a strong feeling among participants that Councils do not want to help Gypsy/Travellers. One
person reported being told by a local Councillor that Gypsy/Travellers are ‘way down the bottom of the
priority list’. During the research period, there were also numerous examples of Council officials and
members making inflammatory comments to the media, only adding to the alienation felt by the community.
Four community members, all carers, further indicated that they feel ‘blacklisted’ by their local Councils.
The carers all feel that they are well known by their Councils and that they are often given the run-around
27 Richard Watts, NDT, Getting There conference, 2014
28 Scottish Parliament Equal Opportunities Committee, 2012, Gypsy/Travellers and Care
18
or actively discriminated against whenever they try to access services. In such circumstances, it is perhaps
not surprising that some Gypsy/Travellers are reluctant to pursue SDS.
5.4 Assessment
“I’d rather talk to the health worker; she knows my needs better than a social worker”.29
Given the above-mentioned lack of trust, many community members eligible for support were reluctant to
undergo an assessment. Whether or not the assessment is renamed as a Support Plan, as proposed in the
Scottish Government’s Carers Strategy consultation, is unlikely to make any difference to those who feel
discriminated against and victimised by their local Councils.
One carer suggested that the visiting health worker to the site she lives on is better placed to carry out an
assessment of her needs than a social worker. She believes that the health worker is more aware of her
needs for improved wellbeing, as she is able to take a more holistic approach, and she would be open to
doing an assessment with her. Others suggested that there is a need to have independent organisations,
such as MECOPP, doing the assessments so that they do not have to deal with the Council themselves.
There seemed to be little flexibility to the assessment process by local authorities. That assessments can
only be carried out by social workers or Occupational Therapists is a major barrier where there are poor
relations with local Councils and, for some, a real fear of social work involvement.
5.5 Portability
“That the single-shared assessment, which should be portable, may not apply once a Gypsy/Traveller has
moved to a new local authority area is unacceptable”.30
The issue of portability was raised during the Equal Opportunities Committee inquiry, highlighting that new
support plans would have to be drawn up every time a Gypsy/Traveller family moved into a new area.
29 Community member, 2013
30 Scottish Parliament Equal Opportunities Committee, 2012, Gypsy/Travellers and Care
19
However, our research suggests the portability of assessment appears to be more of an issue for service
providers than it is for Gypsy/Travellers themselves. Many of those consulted are based in one area for the
majority of the year (often because of ill health or disability and lack of facilities on sites), so portability was
not raised as a major concern. However, surveys and interviews with local authority staff suggest they
consider portability, and mobility, to be the main challenge when supporting Gypsy/Travellers, as evidenced
by the comments in Box 1 below. There is a danger that this becomes an ‘excuse’ for not providing
services to Gypsy/Travellers – as one participant commented, “there’s an attitude of don’t give them
anything as they’ll only move on after a while anyway”.
Having said that, the portability of care packages was raised by one Gypsy/Traveller who had a bad
experience of moving from one local authority to another. Where she lived previously, she felt she was
being inundated with offers of help and that she was “practically turning people away”. However, having
taken the decision to move to another area, which she thought would provide a better environment for her
children; she was shocked to find that none of the same support was available. She puts this down to
prejudice within the new local authority.
The Equal Opportunities Committee, called for “the portability of single-shared assessments and care plans
and consistency of care provision” to benefit all individuals, not just Gypsy/Travellers, when relocating.31
31 Ibid.
BOX 1 – Survey responses from SDS leads
‘The portability of support is something which is very problematic for the travelling community and I believe it is something which needs a lot more discussion and exploration if public bodies are to deliver appropriate support’.
‘How would this be managed and which authority would fund it the originating authority or the locale where the service user was currently temporarily residing’.
‘Issues around responsible Local Authority, without a permanent address within the local authority it may be difficult for us to establish residence and therefore entitlement to support’.
‘The main risks would be that the LA could invest a lot of time in completing the SDS process with these individuals for them then to move on before anything could be implemented’.
‘The biggest risk would be not knowing how long the Travellers were going to stay within the area and the potential of getting a support package in place for it to fall down when they move on’.
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6. How might Gypsy/Travellers use SDS budgets?
The short answer to the question of how might Gypsy/Travellers use their SDS budgets is, ‘in the same
way as everybody else’. A variety of different ways were suggested to use a support package:
One carer living in a rural setting indicated she could use an SDS budget to purchase driving
lessons, which would enable her to take the person she cares for to hospital appointments instead
of relying on patient transport services. It would also enable her to look for part-time employment
outwith the area she lives in.
Another carer talked about using an SDS budget to purchase equipment, suggesting that he would
use funds to buy tools, such as a chainsaw or log-splitter, to help him chop wood for the sister he
cares for thereby relieving some of the physical burden on him.
How Gypsy/Travellers would use an SDS budget very much depends on the individual and their own
support needs. However, some common themes emerged through the research and are discussed next.
6.1 Employing family members
In April 2014, the Scottish Government issued regulations to accompany the SDS Act. Where before, direct
payments could only be used to employ family members “in exceptional circumstances”, the new
21
regulations, listed in Box 2 below, stipulate circumstances where it would be appropriate for family
members to be employed.
BOX 2 – Employing family members
According to the SDS Regulations (Direct Payments) 2014, a family member may provide when:
(a) there is a limited choice of service providers who could provide the support;
(b) the direct payment user has specific communication needs which mean it will be difficult for another provider to provide the support;
(c) the support is required at times at which the family member will be available to provide it and where other providers would not reasonably be so available;
(d) the intimate nature of the support required by the direct payment user makes it preferable to the direct payment user that support is provided by a family member;
(e) the direct payment user has religious or cultural beliefs which make the provision of support by a family member preferable to the direct payment user;
(f) the direct payment user requires palliative care;
(g) the direct payment user has an emergency or short-term necessity for care; or
(h) there are other factors in place which make it appropriate, in the opinion of the local authority, for that family member to provide the support.
However, the research uncovered ‘patchy’ understanding of the rules surrounding the employment of family
members. A lot of information provided by service providers still suggests that family members can only be
employed ‘in exceptional circumstances’, and some community members were told in no uncertain terms
that direct payments could not be used to employ family members.
There also seems to be some resistance to the employment of family members among SDS leads, with
most stating that it would only be considered “as a last resort”. Concerns about mismanagement of funds
and changes to family dynamics were given as reasons for this resistance.
Friends, Families and Travellers have also come across similar attitudes in their work supporting
Gypsy/Travellers in Sussex. However, they recently supported one man suffering from sight loss to use
direct payments to employ his partner to provide care for him. With support from a disability centre, which
helps with the paperwork, the man is now able to access support in a way that is culturally appropriate.
22
The option to use direct payments to employ family members was attractive to many research participants.
There is a strong cultural preference in the Gypsy/Traveller community that caring is kept within the family,
and for many it is “just something you do”. For example, many carers were initially surprised when they first
heard about the MECOPP Gypsy/Traveller Carers’ project, as they did not identify as a carer or use the
term to describe themselves.
All community members felt strongly that personal care should be carried out by family members. As one
carer said, “My mother would rather risk harming herself than get personal care from the Council”.
Although one carer is employing a personal assistant (PA) who is not from the community to help care for
her elderly mother, the PA is still someone close to the family who has known the mother for many years.
The carer was clear that she did not want her mother’s personal care to be carried out by a stranger.
Understanding of this cultural preference could go a long way towards providing support that is more
culturally appropriate for Gypsy/Travellers. As one carer asked, “Why not allow someone who knows [my
sister’s] own particular needs, who knows her, who’s lived with her all her life?”
6.2 Break away together
There is a strong sense among Gypsy/Traveller carers that traditional respite services are not relevant to
them and none of the participants considered residential care for the cared-for person to be an option.
Rather than being offered a ‘break from’ the cared-for person, many carers would welcome the opportunity
to have a ‘break with’ them. One former carer spoke about how she would have liked support for her and
her brother, who she cared for, to visit family down south. This would have given her a break from her
caring role, as her family would have been able to take over the personal care work, without the guilt and
anxiety she would have felt leaving her brother in a residential home. Several other participants also
echoed that being able to visit family elsewhere in the country would provide them with some respite that is
culturally appropriate and more beneficial for them.
It was also suggested by several participants that being supported to take a holiday in a caravan site would
also help to provide a form of respite that is culturally appropriate. For Gypsy/Travellers living in houses,
many of whom feel isolated from their communities, this could be particularly beneficial. Indeed, during the
research period, two carers living in houses were supported to apply for caravan holiday breaks.
23
In early 2014, MECOPP organised two residential drama workshops with a group of 15 Gypsy/Travellers, a
combination of carers and cared-for people. Part-funded by See Me, the aim of the project was to use
drama to explore issues around mental health and stigma. However, as well as kick-starting discussions
around mental health, the residentials also provided a form of respite for community members; a chance for
them to focus on their health and wellbeing in an environment that was supportive.
The key to the success of these ‘breaks’ was in large part due to the trust between community members
and MECOPP staff. For many, the residential was the first time that they had stayed away overnight, and
this trust was key in giving them the confidence to go. However, what really made it work was the support
community members gave each other. Caring was shared among the group – for example, when one carer
was tired at a workshop, others would step in and help to support the cared-for person so that she could
rest. This small example highlights the need for greater understanding that for many Gypsy/Travellers,
‘independent living’ does not mean ‘independence from’ carers, families or communities.
6.3. Health care (of carers)
Almost all of the carers who participated in the research reported having health problems of their own. This
varied from mental health problems, including anxiety, depression and suicidal thoughts, to physical
ailments such as back pain and foot care. Suggestions for support they would like included accessing
health services, such as counselling, complementary therapies, and chiropody.
Some examples of the ways in which carers have used funds to meet their own personal outcomes are
listed below:
BOX 3 – How Gypsy/Traveller carers have directed their own support
A carer in Edinburgh was supported to apply for a break through Support in Mind’s Creative Breaks fund. However, rather than use the money to purchase a holiday, the carer chose to use the money to purchase a six-month gym membership in order to improve her own health and fitness which she feels has suffered because of her caring role.
We supported a carer in Perth to access the Carers Trust Rank Fund for a break, which she used to go to a caravan holiday park with her children – the first time she has had a break from her caring role.
A carer was supported to access Edinburgh City Council’s one-off Carers Payment, some of which she used to have her hair done - something she has not been able to do for a long time.
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7. What would help to enable take-up of SDS?
7.1 Increased cultural competency
Perhaps one of the biggest barriers to Gypsy/Travellers accessing SDS is a lack of cultural competency
among service providers. One of the ways in which this could be addressed is through MECOPP’s popular
Gypsy/Traveller awareness-raising training, all led by community members and delivered to a range of
health and social care staff. The training sessions aim to increase understanding of Gypsy/Traveller carers
in Scotland and to highlight the discrimination often faced by the community, as well as providing an
opportunity to share examples of good practice and difficulties encountered.
7.2 Targeted outreach
Both service providers and Gypsy/Travellers frequently report the ‘trust issue’ as a barrier to accessing
support. However, there seems to be little outreach work, or involvement in events, to try to build trust with
the community and there is a sense that Gypsy/Travellers are someone else’s responsibility; the researcher
was frequently directed to talk to Gypsy/Traveller Liaison Officers or Site Managers, as they are “the ones
who deal with Travellers”. Often, these workers have no knowledge of SDS themselves.
7.3 Peer support
Peer support could be a key way of ‘spreading the word’ about SDS and helping people to negotiate their
way through the SDS pathway. Community members spoke of the benefits of knowing others who are able
to share their experiences. Peer support groups, then, are only likely to work when there are also positive
‘stories’ of SDS working in the community to share.
In Argyll, the Community Contacts peer support project is trying to reach out to the local Gypsy/Traveller
community, and one community member has shown interest in becoming a project volunteer.
7.4 Supported information
“We believe that such advice for Gypsy/Travellers should also be built in to the health and social care
system, including provision of the advice in an appropriate, accessible format”.32
32 Ibid.
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Much of the information available about SDS is inaccessible to the Gypsy/Traveller community, where
literacy levels are lower and very few are accessing social care services. It is not enough to assume that
because someone has been given a leaflet, they are informed about SDS.
In the Gypsy/Traveller community, word of mouth is key to spreading information. Regardless of literacy
level, community members spoke of their preference for receiving information through conversations with
people, again suggesting a role for peer support in promoting SDS. That is not to say that written materials
are redundant entirely; rather, that such materials work best when they are supported by face-to-face
conversations, which links to the need for greater outreach work.
7.5 Workforce training
The research uncovered ‘patchy’ understanding of SDS, particularly the change in regulations surrounding
direct payments and the employment of family members, among social workers. Misinformation from social
workers about SDS has already deterred some community members from pursuing it. Training of all
frontline staff, including clear guidance about the employment of family members, would go some way in
addressing this.
7.6 Flexible approach to assessments
Some community members who are eligible for support are reluctant to undertake an assessment due to a
fear of, and lack of trust in, social work involvement. More community members may be persuaded to have
an assessment if it could be carried out by a trusted health worker or an independent support provider.
7.7 Generating positive case studies
A lack of positive stories of Gypsy/Travellers directing their own support is a barrier to those who have had
no, or poor, experiences of accessing support services. Generating positive stories, perhaps through one-
off pilot projects, and sharing these with community members, would go a long way in encouraging others
to access services.
7.8 Carers payment prescription
One-off payments for carers could work well for Gypsy/Travellers who do not want to approach their local
Councils for support, but who could greatly benefit from some funding to help them in their caring role. One
26
carer, for example, does not want to be linked into social services but could greatly benefit from having new
tools, which would make his caring role a lot easier. Similarly, another carer is keen to purchase a new
hoover and cooking pans, which would make it easier for her to look after her brother. One-off payments
would be well-received by these carers and could help to build trust with service providers
For example, GP surgeries in Surrey can provide carers with a payment prescription of up to £500, which
can be used to purchase short breaks, equipment, etc. There is no formal assessment process and no
involvement from the local Councils. GPs, who are often the first point of contact for carers and the cared-
for seeking support, and who are often more trusted than local authority workers, could play a key role in
ensuring support reaches those who need it.
8. If SDS is the answer, what is the question?
SDS certainly presents an opportunity for Gypsy/Travellers to access support that is culturally, and
personally, appropriate for them. Community members responded positively to the emphasis of ‘choice and
control’ with SDS, and ten have felt encouraged enough to pursue it. However, that there is greater choice
and control over how social care is delivered does not remove the barriers that continue to prevent
Gypsy/Travellers from accessing services.
Zoe Matthews, Strategic Health Manager, at Friends, Families and Travellers, agrees that presenting
people with choice about social care services is good, but argues, “If they have not been able to access
social care services well in the past, to suddenly be presented with choice is not helpful”. She felt that
talking to people about the SDS options is in many ways, putting the ‘cart before the horse’.
That said, the ‘cultural shift’ associated with SDS could help to improve relations between service providers
and the Gypsy/Traveller community. The emphasis on collaboration and co-production – on listening rather
than dictating – could play a key part in generating positive stories of community members accessing
services. However, this needs to sit alongside a shift in thinking.
One of the key learning points from the research has been about the difference that having a good social
worker can make. In all three of the case studies - Carol, Sheila and Jane – the social workers involved
27
played a major role in shaping the community members’ experiences of accessing SDS. Had Carol, for
example, not been pleasantly surprised at how approachable her social worker had been, it is unlikely that
she would have pursued the direct payments option, and even less likely that her mother would now be
receiving direct payments for her support.
If the question is, ‘what will help to encourage Gypsy/Travellers to access social care services?’, then SDS
certainly forms part of the answer. For Gypsy/Travellers to feel confident in accessing services, attitudes
among service providers need to change, and there needs to be meaningful outreach and engagement with
Gypsy/Travellers from local Councils.
9. Next steps
9.1 Everyone Together
Being aware of the absence of ‘good practice’ examples, MECOPP is working with Diversity Matters to run
Everyone Together events for BME communities, including Gypsy/Traveller communities in Perth and
Oban, as a way of raising awareness of, and generating enthusiasm for, SDS among the community. The
events will also provide an opportunity for social workers and other professionals to engage with community
members and hopefully challenge some of the misconceptions that exist about the community.
As part of the events, participants also will be supported to think about their outcomes and will be offered a
small budget to help them to meet that outcome. ‘Stories’ of community members using these budgets will
be captured on film which will then be shared among both community members and service providers to
encourage greater uptake of SDS.
9.2. Cartoon book
The research identified that one of the main barriers preventing access to SDS are the negative
assumptions often made by service providers and a lack of knowledge about Gypsy/Traveller culture. To
address this issue, MECOPP has produced a satirical cartoon book, Two Sides of the Same Story, aimed
28
at highlighting and challenging some of the commonly held attitudes that can prevent Gypsy/Travellers from
accessing SDS.33
Working with an artist, graphic illustrations were created to challenge some of the statements heard
repeatedly during the research, e.g. ‘they’re hostile’, ‘they don’t engage’, ‘they’re not real Travellers’, by
juxtaposing them with the perspectives of Gypsy/Travellers.
The book has been distributed to all SDS teams across Scotland. MECOPP is also developing a lesson
plan to accompany the book, which will then be offered as a stand-alone workshop for key higher education
courses, including social work, nursing and occupational therapy. It is hoped that raising these issues with
students in training will help to develop a more informed and culturally competent workforce.
9.3 Training
MECOPP is already developing its Gypsy/Traveller awareness-raising training sessions, bringing SDS into
the case studies. This has the dual effect of showing service providers how SDS can work for the
Gypsy/Traveller community, as well as increasing the trainers’ (who are themselves community members)
confidence in talking about SDS.
9.4 Ongoing support
Since the start of the project, ten community members across three local authorities are being supported to
start their ‘SDS journey’. This is a huge achievement given the many barriers identified during the research
period that prevent Gypsy/Travellers from accessing support. Only one of the ten now on the ‘SDS journey’
was receiving any kind of support prior to the start of the project.
The time needed to build trust with community members in order to get to this point cannot be
underestimated – Box 4, on the next page, gives an indication of some of the timescales involved in
supporting these cases. In addition to supporting the ten individuals, the SDS Development Worker
continues to carry out outreach work to build trust and identify other community members who may be
eligible for SDS.
33 http://www.mecopp.org.uk/resources-two_sides_of_the_same_story.php?section_id=338
29
9.5 Peer support
It is hoped that some of the Gypsy/Travellers currently being supported on their ‘SDS journey’ by MECOPP
will not only feel more confident and informed, but also more able to support each other in future. This
might include forming local peer support groups in order to improve awareness of SDS and support others
in their community to access more culturally appropriate support.
BOX 4 - Project in numbers
60 hours supporting one individual in Edinburgh to access direct payments; this is a conservative estimate and does not include all the work undertaken to build trust.
6 months one community member in Argyll has been waiting since having an assessment for SDS and is still waiting to hear from the social worker involved.
12 weeks one community member in Perth has been waiting for a social work assessment.
12 weeks one community member in Edinburgh has been waiting for her payment card in order to start using her direct payments.
12 weeks, 5 emails, and 1 cancelled hotel booking to set up a meeting with one SDS service provider.
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10. Case studies
10.1 Case study – Jane
“I am a full-time carer for my father. I thought being a carer was about caring for someone. I didn’t
realise it was also about taking on the role of fighting the council”.
Jane lives on a council-run site. She is a full-time carer for her father who also lives on same site
and until recently, was a carer for her mother who has now passed away. For Jane, “it feels like I
just go from one battle to the next”. She has spent months struggling to get adaptations made to
her father’s caravan, initially being told by the council that “they don’t do adaptations to caravans”.
“The council is bad enough but when you’re a Gypsy/Traveller, you go to the bottom of the list”.
Jane acknowledges that non-Travellers will also face some of the struggles she faces. However,
she feels that being a Traveller, she faces additional struggles.
As a result, Jane feels under great strain and has come to the end of her tether on numerous
occasions. “It got to the stage where I would do anything to avoid picking up the phone again. I’d
think, I’ll just do the dishes, or just do the washing. Because I knew I would have to get into another
debate on the phone”.
Jane currently does not receive any care support. When caring for her mother, she tried to access
direct payments to pay for her relatives to help with the caring. It is important to Jane to keep
caring within the family. However, she was told that the money could not be used to pay for family
members. “They said I could only use it for third cousins. What makes them think my third cousins
are more trustworthy?”
For Jane, having ‘outside’ care is not an option she would consider – “maybe for some Travellers,
but not for me”. She feels that consistency is important in caring for older people.
Jane was offered life coach sessions, which she attended several times. “But it wasn’t relevant to
me”. The life coach sessions focussed on Jane’s wellbeing and offered her help with getting a
hobby, accessing complementary therapies, etc. However, what Jane really wanted was help with
the discrimination she faces. She did not feel that a massage would help her situation, as the root
31
cause of her stress was not being tackled. She tried to use the massage vouchers for her father as
“he needed it more than me” but was told that the voucher was for her to use only.
Jane is still interested in direct payments but thinks it would be “too much hassle” to try accessing it
again. She would be interested in seeing if it works for someone else but feels that she has enough
“battles” to deal with at the moment.
Points to note:
Like many in the Gypsy/Traveller community, Jane feels that she has to ‘battle’ her Council to get basic services. SDS is seen as another ‘battle’.
The opportunity to employ family members is attractive to Jane who feels that caring should be kept within the family, but was put off when told that this was not possible.
The support Jane was offered was not the support that she wanted or needed to help her in her caring role.
32
10.2 Case study – Carol and Bella
Carol lives on a Council-run site, sharing a pitch with her elderly mother, Bella, who suffers from
sight loss and other chronic health conditions.
Carol feels strongly that it is her responsibility to care for her mother. She spends every day with
her, making her cups of tea, doing her washing, keeping her entertained, etc., while her daughter
helps with the cooking and cleaning. However, caring is taking its toll on her own health and she
feels under a great deal of stress, frequently saying, “I don’t know how much longer I can go on like
this”. She has never had a break from her caring role – “I feel like a prisoner” - and feels that her
mental health is suffering as a result.
During a site visit, Carol opened up about the stress she was feeling to a MECOPP worker.
Despite having accessed mental health and housing services, Carol was unaware of any help
available for carers and was surprised when the concept of SDS was introduced.
Although confident with reading and writing, she had previously felt overwhelmed by information
and felt unable to take it all in: “Give me a biscuit, not a feast”.
After several visits, Carol agreed for the MECOPP worker to contact the social care department,
and four weeks later, a social worker visited her at home to carry out a Carer’s Assessment. The
social worker spent over an hour talking with Carol about the care she provides for her mother and
the impact this has on her own health and wellbeing. By the end of the meeting, both Carol and the
social worker had agreed that receiving direct payments would be helpful, allowing her to access
counselling services and also to take regular breaks away and some time to herself.
Carol was surprised that the social worker was “so nice and friendly” and as a result, was
persuaded to arrange for an assessment for her mother who she had previously said would not talk
to a social worker for fear of being put into a residential home. However, put at ease by the social
worker’s gentle approach, Carol agreed for an assessment to be arranged.
A different social worker was assigned to Bella. Prior to her visiting the family, the MECOPP
worker, with Carol’s permission, contacted the social worker to explain how nervous Bella was
about social work involvement. The social worker agreed to carry out an initial visit to introduce
herself, which helped to put Bella’s mind at ease about the assessment process.
33
The social worker visited Bella and Carol on two more occasions to carry out the assessment.
Bella spoke about feeling stuck on the site and how she missed getting out and about. She does
not like the idea of day care centres, preferring instead to visit garden centres with her family, or to
visit friends on a site she used to live on.
Bella, Carol and the social worker agreed that direct payments would help Bella to get out more
often, and would allow her to regain a social life. A support package was put together for direct
payments, allowing Bella to go on day trips once or twice a week, either with Carol or with one of
her grandchildren for support. Bella is currently waiting for the payment card, which she will use to
spend the direct payment, to be processed.
Over seven months later, Carol is still waiting to hear about the outcome of her assessment.
Despite numerous attempts to contact her social worker, there has been no follow-up since the
assessment, which has left Carol feeling disappointed and frustrated.
Points to note:
Carol got her information about SDS through face-to-face conversations with a MECOPP worker and the social worker, not from written materials.
Carol was supported to access SDS by a MECOPP worker who she trusted. The MECOPP worker was present at the meeting with the social workers, which provided reassurance and gave her the confidence to open up.
Carol had already accessed support through other services, but had not known about SDS, showing the importance of raising awareness of SDS among key frontline staff across all services.
Carol was persuaded to arrange for an assessment for her mother only after meeting with the social worker who she found to be “nice and friendly”.
Bella’s social worker took a flexible approach to the assessment process, spreading it over several visits.
Direct payments were attractive to Bella as they will enable her to get out and about on her own terms.
Carol now feels let down by the lack of follow-up from the social worker. She is pleased to
see support being set up for her mother, but feels disappointed that she cannot access support for herself.
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10.3 Case study – Sheila and John
Sheila lives on a local authority site with her family, and is a full-time carer for her disabled son,
John.
Like many in the Gypsy/Traveller community, Sheila has had negative experiences of trying to
access support in the past. She felt that she had been “dictated to” by previous social workers and
Occupational Therapists, and felt that she was constantly being judged and “looked down on”.
John really enjoys getting out and about, and loves going to the various Gypsy/Traveller gatherings
during the summer. He is always asking to get out in the caravan: “Whenever there’s blue sky
outside, he’s asking if we can go out in the caravan”. Occasionally, John’s brother used to take him
to a hydrotherapy pool but this was very expensive for the family – the session alone cost £25,
added to the cost of petrol to get there.
Sheila feels strongly that caring should be kept within the family, and her other children regularly
help her to care for John. Last year, the Council offered to take John on a trip away for a couple of
days in order to provide Sheila with some respite. Uncomfortable with the idea of John going away
without a family member, Sheila suggested to the Council that one of her sons accompany John.
However, the Council refused, insisting that only its staff could go on the trip, which meant it did not
go ahead.
Sheila was interested in accessing SDS in order to “give John the life that he wants”. She heard
about SDS through MECOPP and the local carers centre and thought it sounded like a good idea.
However, when she first asked the Council about it, she was put off pursuing it by the amount of
paperwork she was told is involved. Sheila cannot read or write so would struggle with paperwork.
“It sounded like too much hassle”. However, Sheila came across another social worker who
advised her that she could use a payment card instead of cheques, and encouraged her to pursue
SDS.
Sheila agreed to meet her social worker for an assessment. Together with the social worker, Sheila
identified a number of ways in which she would like to use an SDS budget to meet John’s personal
outcomes, including:
- Employing John’s sibling to provide care;
- Going travelling during the summer;
- Swimming and horse riding for John.
35
Both Sheila and her social worker agreed that direct payments would be the best option. Sheila
said, “It’s not about the money: it’s about giving John the things that he wants”.
After several phone calls by the MECOPP worker to follow up on the assessment, the social
worker visited the family again two months later with an approved package of support. However,
the package only provided for the employment of John’s brother, and did not allow flexibility for
Sheila to take John to various activities.
The social worker was of the opinion that direct payments could only be used to pay for Personal
Assistants (in this case, John’s brother) and was reluctant to discuss it further. Sheila asked why
she could not use a payment card to take John to a Traveller fair, for example, and was told that
only the Personal Assistant would be able to do that. The social worker also presented Sheila with
a large folder of paperwork, and talked at length about payroll services, which Sheila found
overwhelming.
After the MECOPP worker intervened, the social worker said reluctantly that she could revise the
package so that Sheila could access direct payments to pay for activities for John. Overwhelmed
by the meeting, Sheila said she did not want to pursue employing her son, as it seemed like “too
much hassle”, and just wanted to be able to use the money to take John out. On leaving the family,
the social worker added that this is an “innovative package” and that she “doesn’t know what they
[line managers] will accept”.
At the time of writing, over six months since the assessment, Sheila has yet to hear anything.
Points to note:
SDS is attractive to Sheila because of the lack of resources in the area that are both available and relevant to John.
Sheila heard about SDS from a MECOPP worker and staff at the local Carers Centre.
The employment of family members option was attractive to Sheila, who wanted to use direct payments to employ her son. This would have allowed her to access support that is both culturally appropriate and the preferred option for John who is very close to his siblings and not used to strangers providing personal care. However, she was put off pursuing this by the social worker who spoke at length about payroll services and had not grasped what kind of support Sheila was looking for.
Misinformation from the social worker led to Sheila being steered away from the support package she wanted. Had it not been for the MECOPP worker being present at the meeting, Sheila would have ended up either with a package of support that was ill suited to their needs, or without support altogether.
