Self-Directed Support and Gypsy/Travellers

This report provides a summary of the findings of a one-year research project exploring the potential of Self-Directed Support to

meet the care and support needs of Gypsy/Travellers in Scotland. The full report is available on MECOPP’s website: www.mecopp.org.uk

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1. The projectMECOPP (Minority Ethnic Carers of People Project) is Scotland’s leading Black and Minority Ethnic carers organisation providing a range of care and support services to carers from various minority ethnic 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.

In 2013, Scottish Government funding was secured to explore the potential of Self-Directed

Support (SDS) – the new approach to providing social care services in Scotland in which

individuals direct the delivery of their support packages – in meeting the care and support

needs of Gypsy/Travellers. The two-year project was split into two phases: the first a research

phase; the second to implement the recommendations borne from the research.

Drawing on community-based approaches, the aims of the research 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.

Over forty Gypsy/Travellers, of various ages, participated in the research from the three

localities, including men and women. A combination of informal and semi-formal interviews

were carried out and surveys were also conducted with service providers, including all local

authority SDS leads and carer centres in the Carers Trust network.

“We were appalled to hear of discrimination against Gypsy/Travellers amongst support workers and lack of acceptance of the community as a distinct ethnic group.”

Scottish Parliament Equal Opportunities Committee, 2012

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2. What appetite is there for SDS?When the general principles of SDS were explained to community members, there was unanimous support. However, when asked whether they would consider accessing SDS, a number of reasons were provided as to why they did not feel able to.

2.1 ‘Not a Priority’Whilst acknowledging the potential

benefits of SDS, many participants

were dealing with issues around

accommodation and discrimination and

tackling these was by necessity a more

urgent priority.

2.2 ‘Nothing will happen’There was also a sense of fatalism among

many participants, with a feeling that

nothing would happen even if they did

try to access SDS. Much of this is related

to the accommodation problems that

participants faced, many of which have

been rumbling on for years.

2.3 Lack of positive storiesA lack of positive stories of Gypsy/

Travellers directing their own support

means many community members are

reluctant to pursue SDS themselves.

“Show me it working for someone else and I’ll think about it”

Gypsy/Traveller carer

“SDS just sounds like it will be too much hassle”

Gypsy/Traveller carer

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3. What are the barriers to SDS for Gypsy/Travellers?

Barriers for Gypsy/Travellers

accessing SDS

Lack of cultural competency among

service providers

Poor accommodation

Fear of social work involvement

Misinformation from service providers

No positive stories

Discriminatory attitudes among service providers

No trust in local Councils

Inaccessible information/system

3.1 Lack of cultural competencyOne of the biggest barriers preventing Gypsy/Travellers from accessing SDS concerns the attitudes of service providers. Stereotypical and discriminatory remarks were frequently repeated by service providers throughout the research.

3.2 Lack of accessible informationInformation 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.

3.3 Lack of trust in councilsA lack of trust in local councils also prevents Gypsy/Travellers from accessing SDS. Again, much of this stems from

accommodation issues which community members feel their councils do nothing about.

3.4 AssessmentThat assessments are only able to be carried out by social workers or occupational therapists is a major barrier where there are poor relations with local councils and, for some Gypsy/Travellers, a real fear of social work involvement.

3.5 PortabilityThe portability of assessments was reported as a barrier by service providers, but not by community members. Portability was not reported as a major concern among research participants, who are often based in one area for all, or the majority, of the time (often because of ill-health or disability and lack of facilities on sites).

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4. How might Gypsy/Travellers use their SDS budgets?How Gypsy/Travellers would use an SDS budget very much depends on the individual and their own care and support needs. However, some common themes emerged through the research:

4.1 Employing family membersThe option to use direct payments to

employ family members was attractive

to many research participants. All

community members felt strongly that

personal care should be carried out by

family members. However, our research

uncovered patchy understanding of the

regulations surrounding the employment

of family members among service

providers.

4.2 Break away togetherCarers and people being cared-for often

expressed their wish to have breaks away

together. For example, several carers

suggested that being supported to take

a holiday at a caravan site would 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.

4.3 Health care (of carers)Almost all of the carers who participated

in the research reported having health

problems of their own. Suggestions

for support they would like included

accessing health services, such as

counselling, complementary therapies,

and chiropody.

“A lot of carer support is about separating the carer from the person they care for, but I don’t think that should be the case – you should be able to do something together”

Gypsy/Traveller carer

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5. What would help to enable take-up of SDS?

5.1 Increased cultural competencyThe negative assumptions and remarks

often made by service providers,

combined with a lack of knowledge

about Gypsy/Traveller culture, acted as

major barriers. Gypsy/Traveller training,

led by community members, would

undoubtedly help to improve the cultural

competency of service providers. In

addition, MECOPP produced a satirical

cartoon book, Two Sides of the Same

Story, which highlights and challenges

some of the commonly-held attitudes

that can prevent Gypsy/Travellers from

accessing SDS.

5.2 Targeted outreachThe research indicates that there is little

outreach, 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.

5.3 Peer supportPeer support could be a key way of

‘spreading the word’ about SDS and

helping people to negotiate their way

through the SDS pathway.

5.4 Supported informationRegardless 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.

Enabling Gypsy/Travellers

to access SDS

Increased cultural competency among

service providers

One-off payments option

Flexible approach to assessments

Workforce training, including greater understanding of

employment of family members

Positive stories

Targeted outreach

Peer support groups/trusted individuals

Supported information

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5.5 Workforce trainingMisinformation 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.

5.6 Flexible approach to assessmentsMore 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.

5.7 Generating positive case studiesGenerating 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. MECOPP is currently

working on a pilot project in collaboration

with Diversity Matters to help generate

positive ‘stories’ – these will be captured

on film and shared among both

community members and service providers

to encourage greater uptake of SDS.

5.8 One-off payments for carersOne-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.

“I now realise I’ve been ignoring an entire community”

Service-provider

6. If SDS is the answer, what is the question?

“I am a full-time carer … 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.”

Gypsy/Traveller carer

We are grateful to the Scottish Government for funding the project. For a full copy of the report and a copy of Two Sides of the Same Story contact MECOPP.

MECOPP (Minority Ethnic Carers of People Project) 0131 467 2994 www.mecopp.org.uk info@mecopp.org.uk

SDS certainly presents an opportunity for

Gypsy/Travellers to access support that is

culturally, and personally, appropriate for

them. 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.

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 health and social care services.

7. RecommendationsIn order to overcome the barriers faced

by Gypsy/Travellers in accessing SDS, the

following recommendations are made:

• Gypsy/Traveller training sessions for service

providers, led by community members;

• A flexible approach to the assessment

process;

• Targeted outreach to Gypsy/Traveller

community with accessible materials;

• Provision of health and wellbeing events

for Gypsy/Travellers;

• Dissemination of positive SDS experiences;

• Development of peer support groups.