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Holiday Breaks for Adults with Intellectual Disabilities Living with Older Carers

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Holiday Breaks for Adults with Intellectual Disabilities Living with Older Carers

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• Summary: The evaluation of a project instigated by a voluntary group provided an opportunity to investigate the benefits of holiday breaks to both carers and participants. Feedback was obtained from over 100 people with intellectual disabilities through individual and group interviews, as well as from their carers using self-completed questionnaires. • Findings: Overall, the breaks were thoroughly enjoyed by the project members, providing them with a range of activities and leisure pursuits in the company of their friends and, on certain breaks, with non-disabled people as well. Carers reported more benefits to their relative in the later years of the project and became more willing for their relative to attend. • Applications: Three main issues are discussed: the use of mainstream settings and services, rather than specialist facilities, to provide short breaks; how best to encourage other carers of people with more significant needs to avail themselves of these opportunities; and ways of improving the social and leisure networks of people living with families so that the benefits of the ‘holiday’ experience could be recreated more locally and more frequently.
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Journal of Social Work
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DOI: 10.1177/1468017306062224
2006 6: 65Journal of Social Work
Roy McConkey and Joanne McCullough
Carers
Holiday Breaks for Adults with Intellectual Disabilities Living with Older
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Holiday Breaks for Adults
with Intellectual Disabilities
Living with Older Carers
ROY MCCONKEY AND JOANNE MCCULLOUGH
University of Ulster, Northern Ireland
Abstract
Summary: The evaluation of a project instigated by a voluntary group
provided an opportunity to investigate the benefits of holiday breaks to
both carers and participants. Feedback was obtained from over 100
people with intellectual disabilities through individual and group
interviews, as well as from their carers using self-completed
questionnaires.
Findings: Overall, the breaks were thoroughly enjoyed by the project
members, providing them with a range of activities and leisure pursuits
in the company of their friends and, on certain breaks, with non-disabled
people as well. Carers reported more benefits to their relative in the
later years of the project and became more willing for their relative to
attend.
Applications: Three main issues are discussed: the use of mainstream
settings and services, rather than specialist facilities, to provide short
breaks; how best to encourage other carers of people with more
significant needs to avail themselves of these opportunities; and ways of
improving the social and leisure networks of people living with families
so that the benefits of the ‘holiday’ experience could be recreated more
locally and more frequently.
Keywords adults holidays intellectual disabilities older carers
respite breaks
Introduction
The lifestyle of adult persons with intellectual disabilities living with ageing
family carers is usually very different from that of their non-disabled peers
(Department of Health, 2001). Solitary, home-based activities tend to dominate,
with only a minority having friends to share their leisure time in ‘out-of-home’
65
Journal of Social Work
6(1): 65–79
Copyright
© 2006
Sage Publications:
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DOI: 10.1177/1468017306062224
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pursuits; a pattern that has been reported internationally (for example,Ashman
and Suttie, 1996) and with teenagers who have a range of disabilities (for
example, Murray, 2002). Most of their social networks are centred around their
family and parents in particular (Krauss et al., 1992).
Yet as parents grow old, they are less able to accompany their son or
daughter to leisure activities and when they do, it is unlikely to be to events
that would appeal to a younger generation (Walker and Walker, 1998). Others
may be reluctant to use community facilities due to their son’s or daughter’s
characteristics and ‘odd’ behaviour (Birenbaum, 1992). Hence the overall
quality of life of adults living with elderly carers may be less rich than that of
people living away from the family in supported accommodation or group
homes. Yet there is little urgency in professional social services to address this
issue, although it is a concern to people with intellectual disabilities (Sands
and Kozleski, 1994) and to some parents (McEvoy et al., 1990).
Equally, the picture can be bleak from the carer’s perspective. Many have
no opportunity for a break from their caring role (Prosser and Moss, 1996). In
some instances this is because of a reluctance to entrust their relative to
someone else’s care, but often the demand for respite breaks outstrips supply
and parents who appear to be coping are less likely to be offered a service
(McConkey et al., 2003). Kersten et al. (2001) noted that carers who reported
unmet needs for short breaks had significantly poorer levels of mental health
and vitality compared to those who did not have this need.
Even when a respite place is available to carers it tends to be in residential
accommodation such as registered care or nursing homes. This type of break
often has little to offer the person with the disability other than a caring
environment.
One obvious solution to this dilemma is for the person with an intellectual
disability to go on a supervised holiday break, thereby giving the parents an
opportunity for respite from their caring role while their relative has the oppor-
tunity to experience a variety of activities in the company of other people and
their friends (Cummins and Lau, 2003).
In the main, schemes of this type have tended to be provided by voluntary
groups such as Gateway Clubs in the UK. Some social services day centres used
to organize holidays for some of their attenders, but these seem to be less
common now due to issues about staff terms and conditions of employment.
However, most people living in residential homes or supported accommodation
will enjoy at least one break a year in accord with the registration and inspec-
tion standards that apply in the UK.
A group of family carers whose relatives attended on a daily basis a large
training and resource centre in Belfast provided by social services decided to
take action themselves. A funding application was successfully made to the
Community Fund (now known as the Big Lottery Fund) for a three-year
demonstration project called Opening Doors. This was later extended for a
further two years, based on its success and evident need. This paper describes
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the findings from an evaluation which was undertaken throughout the
project.
The Opening Doors Project
The main aims of the project were:
to give adults with an intellectual disability new, varied and challenging
social, recreational and educational opportunities on weekend or week-
long breaks;
to support and encourage family carers and give them periods of respite.
The day-to-day management of the project was undertaken by a part-time,
paid co-ordinator who reported to a sub-committee of the Parents and Friends
Group. The project also drew heavily on the advice, practical assistance and
support of the manager and staff of the centre, whose knowledge of the
members proved invaluable.
All the people attending the Training and Resource Centre in east Belfast
were eligible to participate in the project. This included those living in residen-
tial accommodation and in their own homes, as well as those living with family
carers. The project met all of the accommodation and travel costs of participants
going on a break. Information leaflets were issued and meetings were held with
centre attenders and family carers to explain the project to them and describe
the planned breaks. People chose the dates and locations that suited them, and
requests to go with friends on the same break were honoured as far as possible.
Centre staff, and in some instances parents, advised on which people did not get
along with one another and this too was taken into account. The activities
scheduled for each event were then tailored to the interests and abilities of the
people attending. The project co-ordinator maintained a database of each
person’s preferences and interviewed a sample of attenders after each event to
obtain their reactions to it so that adjustments could be made for future breaks.
Feedback was also sought from family carers and from the leaders of the event
using self-completed pro formas.
In all the locations chosen for the break, the staff of the centre provided the
activity programme for the members. However, additional voluntary helpers
were recruited by the project to provide extra support and supervision, or to
assist with air travel to Great Britain. Those families whose relatives had not
attended a break were given extra encouragement to take up a place on future
events through mailings and phone calls. However, despite this, some did not
take up a place. The needs of people with more profound physical disabilities
could not be easily accommodated on the holiday breaks because of the equip-
ment and nursing staff required to manage their care. For them, the concept of
‘away days’ was introduced. They experienced a trip away from the centre or
their home, with a meal provided. Also, funds were made available for three
groups to go on weekend breaks with support staff from their residential home.
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Breaks Organized
In the first two years of the project (1999 and 2000) all the breaks were taken
at a specialized facility for people with learning disabilities located in a seaside
resort. The centre provided full staff support and no volunteers were involved.
This centre was widely used by groups of people with intellectual disabilities
from different parts of Northern Ireland but it ceased operations in 2003. From
2001 onwards, the project started to use a variety of other ‘mainstream’
locations, mostly for shorter, weekend breaks. These included conference
centres, outdoor pursuit centres and education centres, mostly in Northern
Ireland but also in Scotland and England. Two of the eight centres were
specifically for people with disabilities; mostly physical impairments.
Most of the centres provided accommodation and meals on site. However,
at one outdoor education centre, members lodged in bed and breakfast
accommodation in the village, which brought them into contact with hosts and
other guests. Over the five years of the project, 102 people attended 1 or more
breaks; with the median number of breaks being 2. However, 1 person attended
8 breaks in all; 11 people 6 breaks; 32 people 4 breaks; 44 people 2 or 3 breaks;
and 14 people 1 break. Those who received more breaks had no statistically
significant different characteristics from others who had fewer breaks. In terms
of total days spent away, the average number per person was 13 days (range 2
to 36).
Characteristics of Participants
In all, 164 people with learning disabilities were linked with the centre during
the life of the project. Of these, 102 individuals took part in the project breaks
in the period 1999–2004, for either a week or a weekend. They will be referred
to as ‘members’. However, 62 individuals chose not to attend any breaks or did
not have the opportunity to do so. These will be called ‘non-members’. More
females (52%) than males (48%) went on the breaks. Their average age was 40
years (range 20 to 65 years). Most had no vision or had hearing impairments;
around 10% had mobility difficulties; and one-quarter had epilepsy. Two-thirds
of the members (67%) lived with family carers; around one-quarter (26%) in
supported accommodation; and seven (7%) in their own homes. Proportion-
ately more of the non-members (84%) lived with family carers. Nearly two-
thirds of the members (65%) were totally independent in self-care or only
needed help with some tasks: that is, they could feed themselves, looked after
their own personal needs,could walk, run and climb, had competent use of their
hands, could carry out household chores and could prepare their own meals. By
contrast, two-thirds of the non-members (65%) required assistance with nearly
all self-care tasks (χ2= 12.2: p< 0.001).
Centre staff rated two-thirds (66%) of the non-members as often or
regularly displaying one or more problem behaviours; mostly odd or stereotyped
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behaviour. By contrast, 46% of the project members were reported as often or
regularly exhibiting problem behaviours which were mostly described as over-
active or restless (χ2= 4.9: p< 0.05).Members were also more competent than
non-members in communication and in skills such as reading, writing and
numeracy. One-quarter of the project members attended further education
college, but only four (7%) non-members attended. Similarly,significantly more
of the members were in employment or attended work placements (48%) than
did the non-members (18%), and more of them attended social clubs in the
evenings or weekends (46% compared with 26%). (All differences were
statistically significant: p< 0.01.) In sum, project members tended to be more
competent than non-members and to show fewer problem behaviours,and they
were involved in more community and social activities.
Reactions to Project Breaks
The reactions of members and their family carers were sought in three ways.
Samples of approximately four participants from each project break were
interviewed individually by the project co-ordinator about four weeks after-
wards. In most instances the co-ordinator had not attended the break although
she had organized it. In 1999–2000, 31 attenders gave their views on each of the
breaks; in 2001–2, 26 attenders commented; and for 2003–4, 48 members did. In
addition, staff from the university held 4 group interviews in the centre with 26
participants who had been on a break in 2003–4. Photographs taken on the
various breaks were used to prompt their recollections and, when possible,
people who had been on the same break were in the same group. The family
carers of participants were asked to complete a written questionnaire giving
their perceptions of each break.
Ethical Considerations
Formal ethical approval was not sought for the study as it was solely an audit
of service provision, with most of the data gathering being done by the project
co-ordinator as part of her job function. However, all participants were assured
that any information passed on to university researchers would be confidential
to them; their names would not be disclosed; and their decision to participate
or not would not affect any of the services they received in the future.
Members’ Reactions
In all, 93% of members said they would return to the place that they had visited.
However, 7% of members gave a variety of reasons for not wanting to go back.
For example: ‘I’ve been there too many times’; ‘we could do more activities’;
‘too long a trip – it tired me out’. They were asked to rate each centre on a ‘four-
star’ basis – very good, good, alright, bad – and to do this in terms of food,
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accommodation and the staff who organized the activities. As Table 1 shows,
the mainstream centres tended to be rated higher than the specialist centre,
especially in terms of the staff.
In the group discussions, five themes dominated in the members’ reactions
to taking a break. Unsurprisingly, members tended to judge the breaks on the
same criteria that others use for their holidays.
Being with a Friend
Examples of comments were:
It is good to meet new people, make new friends, it is also good to get to go out at
night time.
Enjoy getting a break away with my friends, get to go to the amusements and
swimming and the bar for a drink.
Activities Experienced
Two members commented:
I prefer Centre A to (specialist centre) because you get to go horse riding.
Would like to go back to Centre S because there’s more to do, there is a pool and I
can go out to dances with my own mates.
Getting Away from Home
For some, simply being away was sufficient:
Enjoy getting a break away with my friends, get to go to the bar for a drink.
I don’t miss home, I love getting away.
Fun
This word was mentioned often:
I enjoyed it, liked going for lunch, B was laughing at everyone swimming.
It was a good laugh at the (specialist) Centre, shame it’s closed.
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Table 1 The number and percentage of members rating features of the two
types of centre
Specialist centre Mainstream centres
Feature of
centre Very good Good Alright/bad Very good Good Alright/bad
Food 4 (7%) 40 (72%) 8 (15%) 7 (21%) 25 (76%) 1 (3%)
Centre (bed/ 4 (7%) 37 (67%) 13 (23%) 5 (15%) 24 (73%) 4 (12%)
bathrooms)
Staff/leaders/ 0 (0%) 42 (76%) 12 (22%) 12 (36%) 18 (54%) 3 (10%)
volunteers
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Facilities Available in the Centres
Members commented on facilities they did not have at home:
I prefer Centre A because there is Sky TV in the bedrooms.
I liked the rooms and the TV, there was bunk beds.
In sum, members’ feedback was largely uncritical, which may reflect a lack of
opportunity on their part to experience holiday breaks. This became less so as
the project continued, with the choice of venues being determined by members’
preferences: a good example of advocacy impacting on practice.
In the group interviews, members were asked if they could go on similar
breaks by themselves, but only 7 participants out of 26 felt they could. Even
then, the proviso was often the need to seek permission, which further under-
lines the dependency they felt on other people. For example:
My sister wouldn’t let me go away on my own, she would be too worried,but if it wasn’t
for her I could go myself.
I wouldn’t be allowed to, my mum would say no.
I couldn’t do it by myself but I’d go with S if she could.
New Experiences
During the individual interviews, members were asked to give examples of new
activities they had experienced during the breaks which they had particularly
enjoyed: these are noted in Table 2. A variety of activities were reported and
these were in marked contrast to those which members typically engaged in at
home (McConkey and McCullough, 2004). This suggests that people with
intellectual disabilities would welcome the opportunity to take part in a wider
range of activities.
Parent/Carer Feedback
The project co-ordinator sent questionnaires to the parents or carers of people
who had gone on the breaks. In 2000–1, 57 questionnaires were returned and
in 2002–3, 152 questionnaires were posted back. The carers were very positive
about the breaks and cited a variety of reasons for this; the most common being
how the person had enjoyed themselves and wanted to return again. Some
noted the gains for themselves. Examples of comments were:
Being away from home gives R more self-confidence.
Plenty of variety of outings. He made good friends with the young staff.
We enjoyed the break. J leads a very sedentary life at home; preferring to sit in front
of the television. These outings are bound to be good for her.
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Not only is this good for N – being away from home; making her demands/feelings
known to others – it is of benefit to her family as we too need time for ourselves.
As you know we had reservations about N going, but he has not stopped talking about
how much he enjoyed himself. I hope this will lead to him wanting to go away again.
A few carers noted aspects they felt should be improved. These included:
There wasn’t enough staff.
Our daughter was expected to use a wheelchair when we had worked for 30 years to
foster her independence in walking.
The bunk beds are not very suitable as they are difficult to get in and out.
No information came back about what he did.
An underlying issue appeared to be poor communication to the centres
about the needs of some of the people coming to stay there. This may have been
acerbated by the attitudes of certain staff members who may have treated the
people as being more dependent than was the case.
Carers’ Ratings of Benefits to Their Relatives
Carers were asked to rate on a three-point scale – agree, disagree, don’t know
– the benefits to their relative of taking part in the breaks. Table 3 summarizes
the results obtained.
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Table 2 New things done or learnt as reported by participants on the breaks
New things learnt/done Total (N= 112)
Visited new places 20 (18%)
Met new people 12 (11%)
Shopping alone 11 (10%)
New games 11 (10%)
Singing and music making 7 (6%)
Archery 6 (5%)
Crafts 6 (5%)
Looked after personal care 6 (5%)
Abseiling 4 (4%)
Canoeing 3 (3%)
Music workshop 2 (2%)
Cooking 2 (2%)
Walking 2 (2%)
Tractor ride 2 (2%)
On an airplane 2 (2%)
Speed boating 1 (1%)
Horse riding 1 (1%)
Computer 1 (1%)
’Lots’ but not specified 15 (13%)
Nothing new/no response 12 (11%)
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The carers tended to rate more benefits for the participants in 2002–3 than
in the earlier two years on all but one of the items listed. They were also much
more likely to want the person to attend a future break than they were in the
earlier years (97% compared to 84%). There was also a tendency for carers to
rate the mainstream centres more highly than the specialist centre in terms of
their benefits – notably in encouraging people to speak to members of the
public; increasing their understanding of social living; and increasing their self-
confidence. Similar findings have been reported by Duvdevaney (2002) and
Rose and Massey (1993).
Discussion
Overall, the breaks were thoroughly enjoyed by the project members, provid-
ing them with a range of activities and leisure pursuits in the company of other
people from the centre they attended, as well as with non-disabled people. This
was confirmed by the reports obtained from their parents and carers, who also
appeared to benefit from having a break. There were few complaints and nearly
everyone wished to repeat the experience. These findings are not surprising
when the usual lifestyle of these individuals is considered. Projects such as
Opening Doors therefore have a vital role to play in providing opportunities
for people with intellectual disabilities to experience new forms of leisure
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Table 3 The number and percentage of carers indicating agreement with
comments over two time periods
2000–1 2002–3
Comment about the breaks N= 57 N= 152
I would encourage the student to attend other breaks in the 48 (84%) 143 (97%)
future
Increases the student’s self confidence 48 (84%) 136 (89%)
Improves the student’s ability to make decisions 46 (81%) 122 (80%)
Encourages the student to mix with people and make new 46 (81%) 134 (91%)
friends
Improves the student’s quality of life 46 (81%) 140 (95%)
Improves the student’s communication skills 44 (77%) 12 (81%)
Encourages the student to act more independently 44 (77%) 125 (85%)
Encourages the student to learn new things 44 (77%) 126 (87%)
Increases the student’s understanding of social living 42 (74%) 134 (91%)
Increases the student’s awareness of local knowledge and 38 (67%) 121 (83%)
attractions
Increases the student’s understanding of shopping 35 (61%) 116 (81%)
Encourages the student to speak to members of the public 35 (61%) 111 (79%)
more
Increases the student’s handling of money 33 (58%) 109 (76%)
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pursuits and to develop the necessary skills for relating to other people, as well
as offering some support to older carers. In many ways these findings are self-
evident, which makes it all the more surprising that so little professional atten-
tion is paid to three issues that projects of this nature highlight: the type of short
breaks currently provided to adult persons with intellectual disabilities; how
respite services can be provided to the most needy individuals; and how the
social and leisure networks of this client group might be developed.
Use of Mainstream Provision
First, why are respite break services still based mainly around specialist
provision? Admittedly they do provide family carers with a break in settings
that ensure the person with the disability is well looked after physically, but the
extent to which they offer a genuine holiday experience to the user is question-
able. The Opening Doors project initially made use of a specialist centre that
provided respite breaks solely to people with intellectual disabilities. This
registered centre employed staff with expertise and qualifications in social care.
The centre transport was available to take people on outings and it was located
within walking distance of the facilities of the seaside resort in which it was
located. Latterly the project switched to using mainstream recreation and
educational centres that it shared with other non-disabled users,and the activity
programme was led by staff who had expertise in particular pursuits. Volunteer
helpers were recruited to provide additional care support as needed. There
were indications from the data gathered that these mainstream centres were
preferred by members and carers. If that is their choice, then the central issue
is the extent to which people with intellectual disabilities can be supported to
access mainstream holidays.
Three elements were central in making these arrangements happen. First,
the project co-ordinator essentially acted as a specialized travel agent – identi-
fying centres; publicizing the holiday; booking places; making travel arrange-
ments; recruiting volunteer ‘holiday assistants’; and liaising with the centres
over special needs and requests. Second, the members had access to personal
assistants (i.e. volunteers) to help them with personal care and in coping with
the new settings, and to assist them in certain activities as well as offering
discrete supervision to avoid potential dangers. Third, the project identified
holiday centres that were willing and able to meet the particular needs of this
client group.
Each of these elements are replicable more generally. The co-ordinating
role could be undertaken by a staff member of social services, a voluntary
organization, or a private concern willing to specialize in this specialist holiday
market. Personal assistants could be provided by the chosen holiday centre. In
one area of Northern Ireland, the hotels have formed a consortium and will
organize personal assistants for those guests who require them. More centres
will open their doors to this client group if they have positive experiences of
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catering for their needs, with access to training and support for their staff. The
supported employment model provides useful exemplars for doing this and the
Disability Discrimination Act provides added incentives for mainstream
facilities to provide equitable access to all their customers.
Of course these new styles of respite break will cost money. This could come
from redeploying current funding for respite breaks in specialist accommo-
dation; through more people accessing direct payments; or from an individual’s
disposable income.
Opportunities for All
One shortcoming of the project was that members who went on breaks tended
to be those who were more competent; had fewer behavioural problems; were
more socially active; and were more likely to attend further education and to
be in supported employment. This was despite repeated attempts to encourage
participation by all family carers linked with the day centre and at no financial
costs to themselves. In a sense those families and individuals most in need of a
break tended not to avail themselves of it. Robertson et al. (2001) identified
similar characteristics among people who had smaller social networks, irrespec-
tive of their accommodation arrangements.
The reasons are likely to be complex. Carers may feel that their relative
would not fit in with a group of people; that they would not receive the same
level of care they were used to; and that the perceived risks would outweigh
any benefits that the break would bring to them. Moreover, many carers
reported that their relative did not want to be away from home, and in many
instances the person was unable to advocate for themselves or had no one to
do so for them. However, the project identified one useful strategy: namely,
parents’ views appeared to change as their son or daughter attended more
breaks. Moreover, the advocacy of some parents in favour of the project was
likely to be an important factor in winning over others. Thus a priority is for the
parents to agree just once to taking a break and if this is a positive experience
there is a greater likelihood that parents will repeat it.
A core issue in this argument remains though: who advocates for the adult
with intellectual disabilities? Most often services will abide by wishes of the
family carer, even if this results in an impoverished quality of life for the
individual. Equally, given the present scarcity of resources, it is unlikely that
social service managers will want to increase demands on their budgets if this
can be avoided. Hence the need to ensure that the voice of the person with
intellectual disability is heard. Nonetheless there are hidden costs of not provid-
ing short break services,both for the carers in terms of their physical and mental
health and for the person with intellectual disabilities who may also develop
mental health and challenging behaviours (McGrother et al., 2001). Greater
recognition of these risks, allied with more person-centred planning in which
the person’s views are to the fore, should result in more attention being paid to
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preventative services, such as short breaks and the provision of social supports
to family carers (Caldwell and Heller, 2003). Of course, certain types of break
might be more suited to people with higher dependency needs,especially when
they require specialized aids and equipment. This could include adult placement
schemes with host families and domiciliary support services as well as breaks in
specialist centres (McConkey et al., 2004).
Developing Social and Leisure Networks
Despite the project’s evident success, it did raise a more fundamental issue.
Would the money have been better spent in other ways to provide more
enduring opportunities for people with intellectual disabilities to develop social
and leisure networks? In part, such a question typifies the low priority given by
social services and social security to the importance of holidays in people’s lives.
Put simply, they are an end in themselves and not a means to an end. In affluent
countries most people will choose to spend money on a holiday even when they
cannot afford it. Thus holidays are an issue of personal choice and one to which
people with intellectual disabilities also have a right. Yet this choice is
frequently denied them; not least because of the costs involved.
At another level though, there is merit in examining how people’s social and
leisure networks could be improved so that they could recreate the ‘holiday’
experience more locally and more frequently. This has proved difficult to do for
three main reasons. First, people with intellectual disabilities lack the skills
required for relationship building; notably for inter-personal communication
and for independent travel. Indeed, the lack of social opportunities is likely to
compound these deficits. Second, their need for supervision and support
requires a more competent person to accompany them: even when such a
person is available, they can become an impediment to people forming relation-
ships with others. Third, people may not be made to feel welcome in community
facilities and they may not be able to protect themselves from bullying or abuse.
Equally, staff may be reluctant to accompany them in such settings; preferring
more ‘semi-insulated’ settings, as noted by Todd (2000); a strategy also adopted
by parents (Birenbaum, 1992).
Action is required on all these points and again the project demonstrated
ways of tackling these issues, as described earlier. However, the holiday tended
to be a ‘one-off’ experience, with little evidence that the breaks had led to any
improvements in members’ friendship patterns or leisure pursuits (McConkey
and McCullough, 2004). One possibility is to integrate holiday breaks with other
leisure schemes such as social clubs, Special Olympics and befriending (Heslop
and Robinson, 2004). Often these schemes have a common need to recruit
voluntary helpers and to challenge public attitudes. A small of team of paid co-
ordinators could take responsibility for different aspects of these services and
work to extend their reach. There may also need to be better co-ordination
among these agencies at a local level than sometimes happens in practice.
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Greater opportunities for social networking would also help to develop the
person’s competence in social skills; an outcome from the holiday breaks that
some parents commented on and which other studies have noted (Rose and
Massey, 1993).
Conclusions
To date, many of the short break respite schemes funded by statutory services
in the UK are predicated on a social care model in which the needs of the carer
for a break are given pre-eminence over the wishes of the person coming into
care. The costs of specialist residential options are high and when demand
exceeds supply, access is very limited. Nonetheless respite breaks are a much
desired support for carers. However, they must be re-orientated to better meet
the social and leisure needs of people with intellectual disabilities as well as
those of older carers.
These could take various forms, but supported holiday breaks in main-
stream centres appear to offer one promising alternative, as this project has
shown. However, this will require a major rethink in social services and
provider agencies as to the value and role of such breaks, the need to advocate
with family carers for the person’s needs, and how to stimulate new forms of
service provision through core funding or direct payments. This is especially
necessary when a greater proportion of people with intellectual disabilities live
with family carers well into their adult years, as is the case in Northern Ireland
(Barron et al., 2006). Their needs as individuals in their own right deserve to
receive greater attention: this is a requirement for children under the Children
Order (1995), but there is no comparable legislative requirement for adults.
The outcome of all these efforts should be a better quality of life for people
living with their families and for their carers.
Acknowledgements
This research was sponsored by a grant from the Big Lottery Fund to Edgcumbe Parents
and Friends Group. Our thanks to Lisa Allen and Attracta Lafferty for their help with
data collection and analysis, and to the project co-ordinators and staff at Edgcumbe
Centre for their support. Roy McConkey’s post is jointly funded by the Eastern Health
and Social Services Board.
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ROY MCCONKEY is Professor of Learning Disability at the University of Ulster, a
post jointly funded with the Eastern Health and Social Services Board. A
psychologist by training, his research focus is on new styles of community-based
services for people with learning disabilities. Among his recent publications are
articles in Children and Society,Journal of Advanced Nursing and Journal of
Intellectual Disability Research. Address: School of Nursing,University of Ulster,
Newtownabbey, Northern Ireland BT37 0QB. [email: r.mcconkey@ulster.ac.uk]
JOANNE MCCULLOUGH is a psychology graduate of the University of Ulster.
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... PSE programs have developed various strategies to address student educational and vocational needs, but travel skills still pose formidable barriers for individuals with intellectual disabilities (Davies et al., 2010;Groce, 1996;McConkey and McCullough, 2006). As a result, students with intellectual disabilities are likely underrepresented in university study abroad programs. ...
... Parents, who did not join on the expeditions, assessed capabilities of their children as stronger after the journey. Similarly, parents whose adult children with intellectual disabilities went on group holidays without family members reported that upon return, children had greater confidence, decision-making skills, and communication skills (McConkey and McCullough, 2006). Individuals with intellectual disabilities express interest in the opportunity to travel. ...
... Davies et al. (2010) cited a series of adaptive challenges that created travel barriers for people with intellectual disabilities, including reading maps, paying for transport services, time management, literacy, and problem solving. McConkey and McCullough (2006) identified travel costs, underdeveloped social skills, and negative attitudes in destination communities as additional barriers to independent travel. For students with limited financial literacy, unfamiliar currencies were feared to compound money management challenges. ...
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Postsecondary education programs have increased opportunities for students with and without intellectual disabilities to study abroad as inclusive classes. Using open-coding qualitative techniques, the authors examined an inclusive study abroad group's daily reflective journals during a study abroad trip to London and Dublin. Three shared categories emerged from analysis: personal development, bonding/social inclusion, and learning from English and Irish adults with intellectual disabilities. Each group reported two distinct categories as well. Students with intellectual disabilities described the importance of mobility/transportation and fun, while their classmates without intellectual disabilities described the importance of inclusive learning and an increasing awareness of barriers to full participation for people with disabilities. Student-constructed categories are used to describe the benefits of inclusive study abroad and build future inclusive international opportunities.
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... Studies demonstrate how tourism impacts positively on a range of economically or otherwise disadvantaged groups, including low-income families, teenage mothers and people with health issues and disabilities and their carers (e.g. Gump & Matthews, 2000;Hunter-Jones, 2004McCabe, Joldersma, & Li, 2010;McConkey & McCullough, 2006;Minnaert, 2014) and relieves stress (Hunter-Jones, 2010;Toda et al., 2004). At the same time, researchers have identified the barriers to older peoples' tourism participation as: economic; time; transportation; health; family responsibilities; the lack of a travelling companion (Blazey, 1986;McGuire, 1984;Romsa & Blenman, 1989;Shoemaker, 2000). ...
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... It has been demonstrated that vacations have positive effects on those who are mostly excluded from vacationing, such as low-income families (McCabe, Joldersma, and Li 2010), patients (Gump and Matthews 2000;Pols and Kroon 2007), and individuals with a disability and their family caretakers (Mactavish et al. 2007;McConkey and McCullough 2006;Strauss-Blasche et al. 2004a). Specifically, McCabe, Joldersma, and Li (2010) conducted a study in the United Kingdom to examine whether low-income families benefit from taking a rare vacation. ...
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Background This paper reviews the issue of integration as it applies to people with an intellectual disability. A compelling finding is the almost exclusive orientation of the literature to physical integration within the general community of non-disabled people. Moreover, it seems to be generally assumed that the more frequently people experience such integration the better their lives will be. Methods We question the validity of this assumption on several grounds. It is social, not physical integration, that has a reliable positive influence on well-being. This is an important conclusion as some disabled people find effective social integration with the general community extremely difficult to achieve. Because of this, the consequences of an overly enthusiastic program of integration for such people has more potential to be more stressful than beneficial. Results We further argue that, as integration is being pursued to benefit the individual, the essential goal of service provision should be to achieve a sense of community connectedness, rather than being concerned with physical integration within the general community. Conclusion It is proposed that such connectedness is more likely to be achieved within the community of people with an intellectual disability.