Confidential – revised draft for comment by members of the Steering Groups
July 2010
The Short Break and Intensive
Support Services provided by
Action for Children in Cardiff,
Edinburgh and Glasgow
Roy McConkey
July 2010
This report provides details of the Short Break and Intensive Support services provided by
Action for Children in three locations :

Breakthrough Project, Caridff

Gilmerton Road, Edinburgh

Stoneside, Glasgow.
A common model of delivery underpins the services in the three locations. This is
described in an accompanying paper1. Also a further paper2 contrasts the characteristics
of the children and families who use the Short Break and/or Intensive Support services as
well as reporting on the changes in the children and parents reported by staff over a six
month period. The aim of this paper is to detail the contrasts among the services in the
three locations and identify possible reasons for these differences. It is primarily for
internal use by Action for Children.
1
An Appraisal of the Service Model for Intensive, Short Breaks to Families and Disabled Young People
whose Behaviour is Severely Challenging.
2
Short Break and/or Intensive Support Services for families with a child who has complex needs
1
Confidential – revised draft for comment by members of the Steering Groups
July 2010
Introducing Action for Children
Action for Children has become a major provider of services to disabled children, in
partnership with local authorities, PCTs and Health Boards across the United Kingdom.
Currently 57 projects provide specialist services for disabled children; this is in addition to
over 9,000 disabled children accessing their inclusive children’s services. A significant
number of children using Action for Children’s current services have severe learning
disabilities and associated challenging behaviour, complex health needs or life-limiting
illnesses.
Their specialist disability services include domiciliary care, residential short breaks (which
accounts for over half our commissioned services for disabled children), residential care
and schools, Children’s Centres, transition support, key working, advocacy, family based
short breaks, specialist and inclusive play and leisure activities. Whether community
based, family based or residential, all the services are tailored to meet the aspirations of
individual children and young people.
The vision of Action for Children is:
“of a world where all children and young people have a sense of belonging, and are
loved and valued, a world where they can fulfil their potential, shape their destiny and
experience the joy of life”.
The organisation’s three core values are:
“Passion: we are driven by our desire to help children and young people overcome
injustice and disadvantage.
Equality: we believe all children and young people have equal worth and equal rights.
Hope: we believe in a child or young person’s potential, no matter what they have
experienced or what they have done”.
Action for Children Intensive Support and Short Break Services
Three services are described in this paper, all of which provide intensive support and/or
short break services. These are Gilmerton Road, Edinburgh; Cardiff Breakthrough; and
Stoneside Short Breaks, Glasgow. These services have formed and are funded in
differing ways however they share two common aims:
“1. To support disabled young people and their families to stay together.
2. To keep the young people included in their communities by for example, supporting
them to use universal local facilities.”
Action for Children commissioned the University of Ulster to undertake an evaluation of the
three services. There are three main aspects to the Review.
1. Describing the key components of the model of service that is common across the
three locations.
2. Documenting and validating the changes there have been in the children and young
people, and their families from participating in the services.
3. Identifying ways in which the service could be improved and how this model of
service might be implemented elsewhere.
A common format is used to describe each of the three services. A brief overview is given
of each service and its aims followed by the distinctive features of the children and families
who use the services. A final section examines the outcomes reported for the services as
reported by the family’s key-workers with illustrative quotes coming also from interviews
2
Confidential – revised draft for comment by members of the Steering Groups
July 2010
undertaken with family carers and personnel who have referred families to the services,
such as social workers.
The service populations
The evaluation included families who had used the service in the past two calendar years
as well as those who currently used the services as at 1st May 2010. Table 1 summarises
the number of families in the three locations.
Table 1: The numbers and percentages of families who currently receive services or have
done so in the previous two years
Service
Edinburgh,Gilmerton
Receiving
service
Left Intensive Support
but receiving short
breaks
Left
service
Total
30
2
14
46
65.2%
4.3%
30.4%
28
24
6
48.3%
41.4%
10.3%
11
4
4
57.9%
21.1%
21.1%
69
30
24
123
56.1%
24.4%
19.5%
100.0%
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough Count
%
Total
Count
%
58
19
As the Table shows, fewer families were involved with the Cardiff Breakthrough service but
each location had varying proportion of families leaving the services.
Gilmerton Road, Edinburgh
This service has been operational for 11 years, funded by NHS
Lothian and the four unitary authorities in Lothian. Referrals are
processed through a multi-agency panel who use a ‘vulnerability
tool’ to prioritise those most in need. The service offers
assessment and behaviour support planning for disabled children
and young people with severe and enduring challenging behaviour
and has a dedicated half time clinical psychologist and the
services of a CAMHS Consultant Psychiatrist. This is integrated with service provision by
a dedicated staff team who support children to access residential short break services and
provide outreach support to enable children to enjoy leisure, play and sports activities in
the community.
The key aims of the project are:

To provide a comprehensive and flexible support service for the children and their
families, as responsive as possible to their needs.

To value the child or young person with learning disabilities and challenging behaviour
and maximize their potential.

To work in partnership with the child and their families, to consider their views and
wishes, and operate a policy of openness and involvement with the child or young
person and their family.

To encourage children and families to fully utilise local community resources and to
provide support to enable them to do so.
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Confidential – revised draft for comment by members of the Steering Groups
July 2010

To work closely with the Project Partners, and with schools, Health services and other
service providers for children and young people with learning disabilities and their
families.

The service will develop individual medical, service and behavioural support plans
which will assist each child and young person to develop his/her potential, taking into
account their emotional, spiritual, intellectual and physical needs, Parents will be
consulted fully about plans and will agree their content.

The service and Action for Children are committed to the protection and safeguarding
of children and young people.
Stoneside, Glasgow
Stoneside has run an intensive family support service for
disabled children whose behaviour is challenging, alongside a
residential short break service since 1999. However the service
was relocated to new premises in 2008. Referrals for children
aged 3-16 years are made through a multi-agency resource
screening group and most children are on the Autistic
Spectrum. Two full time staff work with the child and family in
their home or school and work closely with the learning disability
CAMH’s team to support the practical implementation of behaviour support strategies.
They also model and support parents in boundary setting. On occasions this is crisis
intervention to prevent a child becoming accommodated, for example, where families are
at high risk of breakdown due to the intensity, frequency and severity of challenging
behaviour. The staff also work directly with young people to help them learn anger
management strategies or develop age appropriate life skills such as independent travel.
The service aims to provide opportunities for:

Short breaks for children/young people up to the age of 18 who have arrange of
disabilities and challenging behaviour.

Intensive Family Support for families with a child (or children) whose behaviour
presents a significant challenge to the family, education and social work.

Holistic care planning developed in consultation with the child/young person, their
family and other agencies involved on a regular basis.

The child/young person to be less dependent on their families and develop new
friendships and social experiences.

Children and young people to maximize their potential in a range of areas including
self-help skills, confidence-building etc.

Parents/carers to develop and sustain skills to manage their son/daughter’s behaviour
within and outwith the home environment.

Families to see their son/daughter in a positive light and see the potential in their
relationships/
Cardiff Breakthrough
The Breakthrough service has run since 1997 and is co-located
with a residential short break service and provides intensive
support to access community based play, sport and leisure
activities for a small group of very challenging young people aged
7-17 years at risk of exclusion from other services for disabled
children. The young people are likely to have extensive needs
including being on the autistic spectrum with severe learning
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Confidential – revised draft for comment by members of the Steering Groups
July 2010
disabilities. Access is for 6 months followed by supported transition to other service
provider’s and seeks to deliver specific objectives such as reducing the risk of social
exclusion; supporting skills development and safer ways of expressing need; supporting
children and families to have a better quality of life. It is supported by a Clinical
Psychologist.
The project aims to increase the inclusion of children with severe learning disabilities
between 8-18 years, who present with severely challenging behaviour into ordinary and
specialist services in their local communities, whilst embracing and supporting the capacity
of families to care for the child and sustain the family group, within the city of Cardiff.
The objectives of the project are:

To reduce the exclusion of children and young people who show severely challenging
behaviour in junction with other agencies.

To support children and young people to develop and enhance their skills in natural
settings.

To support children and young people to minimise the impact of their inappropriate
behaviour and encourage positive behaviours.

To help prevent children who display severely challenging behaviour, going to live in an
out-of-county residential placement.

To enable parent/carers and other family members to have a break from their caring
responsibilities in order to maintain and enhance children and young people’s position
within their families.

To involve parents/carers, and where appropriate children and young people, in the
planning and review of services provided.

To ensure all staff has the skills and knowledge required to carry out their duties to a
high standard.

To ensure all aspects of service delivery and employment are anti-discriminatory and
value diversity.
1. The Use of Services by Children and Families
Table 2 shows the services presently received by the families. The Glasgow service
provides mainly short breaks whereas the Cardiff service is either Intensive Support only
or allied with Short Breaks. Families who receive only short breaks in Cardiff are not
included in this study. NB The smaller numbers in Cardiff means that comparisons across
the three services should be treated with some caution.
Table 2: The numbers and percentages of families presently receiving services
Service
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Intensive
support
Short
breaks
Both
Total
4
16
12
32
12.5%
50.0%
37.5%
100.0%
6
42
4
52
11.5%
80.8%
7.7%
100.0%
4
0
11
15
26.7%
.0%
73.3%
100.0%
14
58
27
99
14.1%
58.6%
27.3%
100.0%
5
Confidential – revised draft for comment by members of the Steering Groups
July 2010
The median ages at which children started receiving the short break services is shown in
Table 3. (NB The start date is missing for some children, especially in the Glasgow
service.) Children tend to be younger in the Edinburgh service than in Cardiff or Glasgow
however the age range is wide in all three services but largest in Glasgow although this
includes a baby who came to the service many years previously and still receives Short
Breaks.
Table 3: The median, minimum and maximum ages when child started to receive the short
break services
Service
Edinburgh Gilmerton
Glasgow Stoneside
Cardiff Breakthrough
Total
N
Median
Minimum
Maximum
Receiving service
26
8.6
5.5
14.6
Left service
11
9.2
6.3
14.9
Total
37
9.1
5.5
14.9
Receiving service
39
12.2
0.6
18.4
Left service
2
14.0
13.6
14.4
Total
41
12.8
0.6
18.4
Receiving service
7
10.4
7.9
12.3
Total
7
10.3
7.9
12.3
Receiving service
72
10.2
0.6
18.4
Left service
13
9.5
6.3
14.9
Total
85
10.2
0.6
18.4
Likewise Table 4 summarises the children’s age when they started Intensive Support. The
pattern is slightly different for the Glasgow service with children starting intensive support
at a younger age than they did short breaks. For the other two services, the age range is
similar as for the short breaks (check Cardiff start date for one person).
Table 4: The median, minimum and maximum ages when child starting receiving the
intensive support services
Service
Edinburgh
Gilmerton
Glasgow
Stoneside
Cardiff
Breakthrough
Total
N
Median
Minimum
Maximum
Receiving service
16
9.5
6.0
16.2
Left service
8
8.5
6.3
13.9
Total
24
9.2
6.0
16.2
Receiving service
32
8.2
5.0
15.6
Left service
6
10.5
4.3
15.5
Total
38
8.3
4.3
15.6
Receiving service
15
12.5
9.7
17.1
Left service
3
9.5
0.5
16.1
Total
18
11.8
0.5
17.1
Receiving service
63
10.3
5.0
17.1
Left service
17
9.5
0.5
16.1
Total
80
9.7
0.5
17.1
The median length of time in years that children have been using short breaks is given in
Table 5. Although the median is around two years across all three services, the range is
wide within all the services.
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Confidential – revised draft for comment by members of the Steering Groups
July 2010
Table 5: The median, minimum and maximum length of time in years child have used the
short break services
Service
N
Median
Minimum
Maximum
Edinburgh Gilmerton
26
3.1
0.2
11.3
Glasgow Stoneside
39
1.1
0.1
16.2
Cardiff Breakthrough
7
2.6
0.7
7.9
Total
72
2.0
0.1
16.2
Amount of service received
Tables 6 and 7 summarise the quantum of services provided to families in terms of short
breaks nights per annum or the number of hours of intensive support per weeks.
The Edinburgh service provides the highest median3 number of nights to families and
Cardiff the lowest although the range of nights provided across families is highest in
Cardiff (22 to 100 nights per annum) and in Edinburgh (15 to 90 nights per annum).
Families who receive intensive support have a median of four hours per week in Scotland
with the Edinburgh service offering a minimum of four hours to all their families but some
families in Glasgow and Edinburgh have double this amount. Cardiff provides the highest
number of hours at 12 per week but a lower median of three hours per family.
Table 6: The median number of nights per annum provided across the three services
Short Break service
N
Median
Minimum
Maximum
Edinburgh Gilmerton
28
36.0
15
90
Glasgow Stoneside
44
32.0
24
61
Cardiff Breakthrough
11
24.0
22
100
Total
83
32.0
15
100
Table 7: The median number of intensive support hours per week across the three services
Service
N
Median
Minimum
Maximum
Edinburgh Gilmerton
16
4.0
4.0
8.0
Glasgow Stoneside
10
4.0
2.0
7.0
Cardiff Breakthrough
15
3.0
2.0
12.0
Total
41
4.0
2.0
12.0
Service leavers
The service profile of families who have left the services is shown in Table 8. The
Edinburgh service has the highest turn-over of families at 44% (in the time period of this
review, i.e 2.33 years), with most of the leavers having received both intensive support and
short breaks. The comparable turn-over figure in the same time period for Glasgow was
12% and for Cardiff 27%.
Over the three services, five families left the short breaks service in 2008, six in 2009 and
five in the four month period from January to April 2010. In the last two calendar years this
3
Median is the point at which the group is divided in two equal groupings: i.e. around 50% in each.
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Confidential – revised draft for comment by members of the Steering Groups
July 2010
is a turn-over rate of around 6% (but this may be higher in 2010 as already this rate has
been reached).
Table 8: The number and percentage of families who had left the services in the previous
two years.
Type of service received
Intensive
Short
Both
Support
breaks
Service
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Total
2
5
7
14
14.3%
35.7%
50.0%
100.0%
3
0
3
6
50.0%
0.0%
50.0%
100.0%
4
0
0
4
100.0%
0.0%
0.0%
100.0%
9
5
10
24
37.5%
20.8%
41.7%
100.0%
The median length of time the children had used short breaks was 2.5 years (range 7
months to 11 years).
There was a higher turn-over in the intensive support services, in that 44 children had
previously received intensive support services across the three services although a
sizeable number (N=20) continued to avail of short breaks (see Table 1). Assuming that
the number of places in Intensive support remained constant at around 40 families, then
the turn-over rate for 2008 was 27% and for 2009 was 37%.
Conclusions
Although the services share a common ethos and models of provision, there are some
notable variations in the delivery of the services in the three locations. This is likely to
arise through the local commissioning process and the range of referrals made to the
individual services. This will also be influenced by the availability of other services
within the locality. The variation is further compounded by the length of time the service
is operational in that criteria may change over time but earlier service-users may
continue to avail of it with a different pattern of needs.
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Confidential – revised draft for comment by members of the Steering Groups
July 2010
2. Characteristics of the families
Across all three services, nearly all children lived with their natural parents although there
were two instances of adopted children, both in Edinburgh services. The majority of
families were White-British but as Table 9 shows families from other ethnic backgrounds
were more common in the Cardiff service.
Table 9: The number and percentage families by ethnicity in the three services.
Service
Edinburgh Gilmerton
White-British
Other
Total
41
5
46
89.1%
10.9%
100.0%
52
5
57
91.2%
8.8%
100.0%
13
6
19
68.4%
31.6%
100.0%
106
16
122
86.9%
13.1%
100.0%
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
In all three services there was a high proportion of lone parents as shown in Table 10
particularly in Scotland rather than Cardiff.
Table 10: The number and percentage of lone parents across the three services.
Service
Edinburgh Gilmerton
Two Parents
Lone Parent
Total
26
20
46
56.5%
43.5%
100.0%
32
22
54
59.3%
40.7%
100.0%
13
6
19
68.4%
31.6%
100.0%
71
48
119
59.7%
40.3%
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
100.0%
The largest proportion of primary carers were aged between 40-49 years followed by those
aged 30-39 years. Only small proportions were aged under 30 and 50 plus (see Table 11).
Table 11: The number and percentage of primary carers by age groups across the three
services.
Service
Edinburgh Gilmerton
Age Group of Primary Carers
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Total
Under 30
30-39
40-49
50 +
5
13
22
3
43
11.6%
30.2%
51.2%
7.0%
100.0%
4
21
25
2
52
7.7%
40.4%
48.1%
3.8%
100.0%
0
9
5
4
18
.0%
50.0%
27.8%
22.2%
100.0%
9
43
52
9
113
8.0%
38.1%
46.0%
8.0%
100.0%
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Confidential – revised draft for comment by members of the Steering Groups
July 2010
Over two-thirds of primary carers were fulltime home makers with fewer than a quarter in
some form of paid employment; the proportions of which tended to be higher in the
Edinburgh service (see Table 12).
Table 12: The number and percentage of primary carers by employment across the three
services.
Primary carer’s employment
Service
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Total
Fulltime
Parttime
Unemployed
Home
maker
Long-term
illness
4
10
0
32
0
46
8.7%
21.7%
.0%
69.6%
.0%
100.0%
8
5
3
39
2
57
14.0%
8.8%
5.3%
68.4%
3.5%
100.0%
1
3
0
13
1
18
5.6%
16.7%
.0%
72.2%
5.6%
100.0%
13
18
3
84
3
121
10.7%
14.9%
2.5%
69.4%
2.5%
100.0%
An estimate was provided by service personnel as to the family income. As Table 13
shows, over half the families were dependent on social security benefits with a further 10%
on low incomes. Fewer than one in 7 families were considered to have above average
income. The proportion was higher in Edinburgh.
Table 13: The number and percentage of primary carers by estimated income groupings
across the three services.
Services
Above
average
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Estimated family income
Average
Low
income
Total
Benefits
8
16
3
18
45
17.8%
35.6%
6.7%
40.0%
100.0%
6
8
4
38
56
10.7%
14.3%
7.1%
67.9%
100.0%
2
2
5
10
19
10.5%
10.5%
26.3%
52.6%
100.0%
16
26
12
66
120
13.3%
21.7%
10.0%
55.0%
100.0%
Likewise the proportion of families living in rented accommodation was lowest in
Edinburgh and Cardiff but highest in Glasgow as Table 14 shows.
Over two in five children were only children within the family and a further third had one
sibling. Just over a quarter had two or more siblings. This pattern was similar across the
three services. A proportion of the siblings also had a disability as follows: Edinburgh 5/27
(19%): Glasgow 10/34 (29%): Cardiff 1/11 (9%).
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Confidential – revised draft for comment by members of the Steering Groups
July 2010
Table 14: The number and percentage of families by type of housing across the three
services.
Service
House
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Total
Owned
Rented
25
19
44
56.8%
43.2%
100.0%
15
43
58
25.9%
74.1%
100.0%
8
9
17
47.1%
52.9%
100.0%
48
71
119
40.3%
59.7%
100.0%
The wellbeing of carers and families
Key-workers were asked to rate the family carers who were currently receiving services on
a number of indicators. As the following tables show, over half the primary carers had an
occasional or major physical health problem with even higher proportions having emotional
difficulties. Physical health problems were significantly more common in Glasgow (see
Table 15) and emotional problems in the Cardiff service (Table 16).
Table 15: The number and percentage of family carers rated by key-workers as having
physical health problems across the three services.
Services
Edinburgh Gilmerton
Glasgow Stoneside
Cardiff Breakthrough
Total
Physical Health
Count
Count
Count
Count
Total
Good
Occasional
problem
Major
problem
30
11
5
46
65.2%
23.9%
10.9%
100.0%
16
35
7
58
27.6%
60.3%
12.1%
100.0%
11
4
3
18
61.1%
22.2%
16.7%
100.0%
57
50
15
122
46.7%
41.0%
12.3%
100.0%
(Chi Sq 19.2 p<0.01)
Also families in Cardiff were significantly more likely to experience problems in family
functioning as Table 17 shows. Problems with the wellbeing of siblings was similar across
the three services (for over half the families a major or occasional problem was reported)
but the risk of family breakdown was significantly higher with Cardiff families (see Table
18).
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July 2010
Table 16: The number and percentage of family carers rated by key-workers as having
problems in emotional well-being across the three services.
Services
Edinburgh Gilmerton
Glasgow Stoneside
Cardiff Breakthrough
Total
Emotional Well-being
Count
Count
Count
Count
Total
Good
Occasional
problem
Major
problem
12
27
6
45
26.7%
60.0%
13.3%
100.0%
9
42
6
57
15.8%
73.7%
10.5%
100.0%
0
12
7
19
0.0%
63.2%
36.8%
100.0%
21
81
19
121
17.4%
66.9%
15.7%
100.0%
(Chi Sq 12.9 p<0.05)
Table 17: The number and percentage of family carers rated by key-workers as having
problems in family functioning across the three services.
Services
Edinburgh Gilmerton
Glasgow Stoneside
Cardiff Breakthrough
Total
Family Functioning
Count
Count
Count
Count
Total
Good
Occasional
problem
Major
problem
13
23
9
45
28.9%
51.1%
20.0%
100.0%
16
34
7
57
28.1%
59.6%
12.3%
100.0%
0
10
9
19
.0%
52.6%
47.4%
100.0%
29
67
25
121
24.0%
55.4%
20.7%
100.0%
(Chi Sq 14.2 p<0.01)
Table 18: The number and percentage of families rated by key-workers at risk of break-up
across the three services.
Services
Edinburgh Gilmerton
Glasgow Stoneside
Cardiff Breakthrough
Total
Risk family break-up
Count
Count
Count
Count
Total
Little risk
Some risk
Definite risk
18
17
11
46
39.1%
37.0%
23.9%
100.0%
39
11
7
57
68.4%
19.3%
12.3%
100.0%
2
10
7
19
10.5%
52.6%
36.8%
100.0%
59
38
25
122
48.4%
31.1%
20.5%
100.0%
(Chi Sq 21.7 p<0.001)
12
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July 2010
Nonetheless families in Cardiff were rated as having higher levels of co-operation with the
service – see Table 19 - probably due to the more frequent contact that the service has
with the families through home support.
Table 19: The number and percentage of families rated by key-workers in terms of their cooperation with the three services.
Services
Edinburgh Gilmerton
Glasgow Stoneside
Cardiff Breakthrough
Total
Co-operation with service
Occasional
Major
Good
problem
problem
Count
Count
Count
Count
Total
32
14
0
46
69.6%
30.4%
0.0%
100.0%
37
14
6
57
64.9%
24.6%
10.5%
100.0%
19
0
0
19
100.0%
0.0%
0.0%
100.0%
88
28
6
122
72.1%
23.0%
4.9%
100.0%
(Chi Sq 14.9 p<0.005)
Conclusions
The variations that are apparent across the three services may in part arise due the
different socio-economic characteristics of the locations in which the services are
based. For example, the area around Edinburgh is generally more affluent than
Glasgow. But it is also possible that some of the variation arises from the referrals
made to the project and perceptions of their role by commissioners and referrers.
Hence the Cardiff service reports higher levels of family problems. But the smaller
numbers in this service means that differences should be treated with caution.
13
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July 2010
3. Characteristics of the Children
Nearly three-quarters of the children who use or have used the services are male; with
slightly more females in the Cardiff service - 32% - compared to 24% in the Scottish
services.
The ages of children (as at 1st May 2010) who are currently receiving services are
summarised in Table 20. Typically over 50% of the children are teenagers with an age
range among current users of the services from 4 years to 20 years. This is similar
across the three services.
Table 20: The median, minimum and maximum ages of the children who currently use
services and who had left in the past two years.
Service
N
Median
Minimum
Maximum
Edinburgh Gilmerton
32
12.8
6.6
18.4
Glasgow Stoneside
52
13.9
6.9
18.7
Cardiff Breakthrough
15
13.5
10.4
17.3
Total
99
13.4
6.6
18.7
Nine out of 10 children attended a special school with six enrolled in a mainstream school.
One child was currently excluded from school and one had left school.
In addition to their learning disability, almost two-thirds of the children had a diagnosis of
Autism Spectrum Disorder and a further one in ten had a suspected ASD. Also four
young people with Asperger’s syndrome attended the Glasgow service.
The children had a variety of other syndromes including Angelman’s, Fragile X , Complex
Ring X, Downs, Congenital microcephaly, Rhett's, Smith Magenis, Sturge Weber and
Tourette syndrome.
Across the three services, nearly all the children were mobile (92%) with only two wheelchair users although six had limited mobility. One child was blind for all practical
purposes and further 16 (17%) had visual difficulties. Another child was severely hearing
impaired and six others had some problems in hearing. Two children had uncontrolled
epilepsy with a further 16 (17%) taking medication to control seizures.
There were few significant differences across the services in terms of children’s
competences. Only one third of the children communicated verbally with one quarter
dependent on non-verbal communication. Nearly one-third had to be helped with feeding
and one quarter were totally dependent on others to be dressed and washed. Over a
quarter were doubly incontinent. (Tables A.1 to A.5 in the Appendix gives the proportions
of children for the three services)
Key-workers rated the children and young people who are currently using services on a
range of challenging behaviours as listed in Table 21. The Appendix shows the
breakdown of each behaviour across the three service locations. The pattern of
behaviours were broadly similar except that in Cardiff children were rated as displaying
more ritualised, stereotyped behaviours, greater risk of injury to others and more
sexualised behaviours. Children attending the Glasgow service tended to show fewer
challenging behaviours.
14
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July 2010
Table 21: The number and percentage of children across all three services displaying the
behaviours listed (NB * indicates significant differences across the services)
Challenging
Behaviours
Sleep problems
Rating given
Stereotyped
behaviours*
Count
Hyperactivity
Count
%
%
Injury to others*
No problem
17
15
30
36
98
17.3%
15.3%
30.6%
36.7%
100.0%
14
20
35
27
96
14.6%
20.8%
36.5%
28.1%
100.0%
14
21
21
40
96
14.6%
21.9%
21.9%
41.7%
100.0%
9
20
26
42
97
9.3%
20.6%
26.8%
43.3%
100.0%
7
16
21
53
97
7.2%
16.5%
21.6%
54.6%
100.0%
5
12
27
52
96
5.2%
12.5%
28.1%
54.2%
100.0%
5
11
16
63
95
5.3%
11.6%
16.8%
66.3%
100.0%
3
6
12
72
93
3.2%
6.5%
12.9%
77.4%
100.0%
0
8
12
76
96
0%
8.3%
12.5%
79.2%
100.0%
Count
%
Screaming
Mild
Count
%
Self-injury
Moderate
Count
%
Damage to Property
Severe
Count
%
Count
%
Depressed,
withdrawn
Count
Sexualised
behaviours*
Count
%
Total
%
The number of different behaviours rated as major or moderate that each child displayed
was counted – see Table 22. This confirms the higher levels of challenging behaviours
displayed by children in the Cardiff service with a median of three different behaviours
being reported per child and up to a maximum of eight different behaviours (F=10.25:
P<0.001). However it should be noted that some children in the other services may have
previously displayed similar challenging behaviours on referral to the project but these had
lessened – see Section 4).
Table 22: The median, minimum and maximum number of different behaviours rated as
severe or moderate across the three types of services
Service
N
Median
Minimum
Maximum
Edinburgh Gilmerton
32
1.5
0.0
6.0
Glasgow Stoneside
52
1.0
0.0
7.0
Cardiff Breakthrough
15
3.0
1.0
8.0
Total
99
2.0
0.0
8.0
Nearly one-third of children were on medication for mood and behaviour and a further
quarter of children took some other form of medication. Children attending the Glasgow
were less likely to be taking medication as Table 23 shows with those in Cardiff having the
highest proportion on medication for mood and behaviour (Chi Sq 17.2: p<0.005).
15
Confidential – revised draft for comment by members of the Steering Groups
July 2010
Table 23: The number and percentage of children taking medication across the three
service locations.
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
For mood &
behaviour
Other
medication
None
Total
14
8
9
31
45.2%
25.8%
29.0%
100.0%
7
16
27
50
14.0%
32.0%
54.0%
100.0%
9
2
3
15
60.0%
13.3%
20.0%
100.0%
30
26
39
96
31.3%
27.1%
40.6%
100.0%
Conclusions
The children using the three services show very similar characteristics which is not
unexpected in that the services are deigned to meet the needs of children, and more
especially teenagers, with more severe or complex needs. However the young people
supported by the Cardiff service appear to have higher levels of challenging behaviours,
with the Edinburgh service reporting lower levels but greater than those in the Glasgow
service. The smaller number of children in Glasgow receiving medication for mood and
behaviour may reflect the lack of access that these children have to consultant
psychiatrists compared to the other two services.
16
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July 2010
4. Improvements in children and families
Key-workers were asked to rate the children as to any changes they had observed in the
past six months or since the children joined the service if it had been within the past six
months. Table 24 shows the proportions of children who had improved, stayed the same
or worsen in the areas listed. A similar pattern emerged across the three services
although more children using the Scottish services tended to be rated as improved in
feeding and personal care than did those in Cardiff (see the Appendix for a breakdown by
each service on these indicators).
Table 24: The number and percentage of children rated as having changed in last 6 months
across the three services
Communication
Count
%
Feeding self
Count
%
Personal Care
Count
%
Continence
Count
%
Some
improvement
Same
Worse
Total
38
49
1
88
43.2%
55.7%
1.1%
100.0%
31
58
0
89
34.8%
65.2%
0
100
38
51
0
89
42.7%
57.3%
0
100
30
57
1
89
34.1%
64.8%
1.1
100
Similar ratings were done for challenging behaviours that the children were recorded as
displaying (see above) and the results are displayed in Table 25.
Table 25: The number and percentage of children rated as having changed in last six
months in the challenging behaviours listed (NB * significant difference across services)
Hurts Others
Stereotyped
Hyperactivity
Sleep*
Sexualised
behaviour
Damage to
property
Screaming
Self-injury
Depression
Count
%
Count
%
Count
%
Count
%
Count
%
Count
%
Count
%
Count
%
Count
%
Some
improvement
25
52%
29
48%
21
45%
24
44%
5
36%
13
34%
8
32%
11
31%
5
28%
Same
Worse
Total^
22
46%
32
52%
25
53%
31
56%
5
36%
23
61%
17
68%
24
66%
12
67%
1
2%
0
0%
1
2%
0
0%
4
29%
2
5%
0
0%
1
3%
1
6%
48
61
47
55
14
38
25
36
18
^ The number of children for whom this had been noted as a problem
17
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July 2010
A similar pattern of improvement was found across the three services with the exception of
sleep problems. Higher proportion of children in the Edinburgh service were reported to
have improved compared to Cardiff (50% v 0%) (Chi Sq 10.4:p<0.005).
However higher proportions of children were reported to have increased medication as
shown in Table 26; with a tendency for this to be higher in the Edinburgh service (p<0.08).
Table 26: The number and percentage of children rated as having changed their medication
in the last 6 months across the three services
Service
Edinburgh Gilmerton
Change in medication
Some
Same
Increased
reduction
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Total
4
12
9
25
16.0%
48.0%
36.0%
100.0%
4
35
6
45
8.9%
77.8%
13.3%
100.0%
0
7
1
8
.0%
87.5%
12.5%
100.0%
8
54
16
78
10.3%
69.2%
20.5%
100.0%
The key-worker also assessed if there had been any change in the risk that the child might
have to live away from the family. This risk was thought to have increased for children in
the Edinburgh service compared to other services (p<0.09).
Table 27: The number and percentage of children rated in terms of risk for leaving home in
the last 6 months across the three services
Service
Edinburgh Gilmerton
Change in risk of child leaving home
Count
%
Glasgow Stoneside
Count
%
Cardiff
Breakthrough
Total
Count
%
Count
%
Total
reduced risk
same
increased
3
17
6
26
11.5%
65.4%
23.1%
100.0%
4
39
1
44
9.1%
88.6%
2.3%
100.0%
1
7
1
9
11.1%
77.8%
11.1%
100.0%
8
63
8
79
10.1%
79.7%
10.1%
100.0%
Improvements in families
Similar ratings were also provided by key-workers on the family characteristics and the
findings are shown in Table 28. A similar pattern was found across the three services
although those linked with the Glasgow services tended to be rated as having improved in
terms of physical health and emotional wellbeing whereas in Edinburgh there had been an
increased risk of family break-up with some families. However the majority of families had
improved involvement and co-operation with the services.
18
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July 2010
Table 28: The number and percentage of families who were rated as having changed in last
six months in the characteristics listed.
Physical Health
Count
%
Emotional well-being
Count
%
Family functioning
Count
%
Sibling wellbeing
Count
%
Risk family breakdown
Count
%
Coping
Count
%
Involvement with
services
Count
Co-operation with
services
Count
%
%
Some
improvement
Same
Worse
Total*
11
29
3
43
26%
67%
7%
14
51
5
20%
73%
7%
15
46
7
26%
79%
12%
7
27
4
18%
71%
11%
9
25
8
21%
60%
19%
21
39
6
32%
59%
9%
13
9
1
57%
39%
4%
15
10
2
56%
37%
7%
70
58
38
42
66
23
27
* The number of families for whom this had been noted as a problem
Conclusions
Across the services there was a similar pattern of changes reported in children’s
communication and personal care although these were more apparent in the Scottish
services where more children used short breaks. Likewise, the children showed similar
improvements in various behaviours. However the Edinburgh service reported more
children receiving increased medication and the young person being at greater risk of
leaving the family home or of a family break-up. There was evidence of improvements
in carer’s health and wellbeing in all three services. Again the smaller numbers in the
Cardiff service means that comparisons should be treated as indicative.
Further Reports
This detailed profile of the children and families illustrates both the variety and complexity
of needs that the services are attempting to address in the three locations. There are
variations in the three services in terms of service provided and characteristics of the
families they serve. However there are promising signs of improvements in the children
and families as perceived by the service staff. The reasons for the variation are manifold
and the final report on the study will explore them in further detail.
19
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July 2010
Acknowledgements
Sincere thanks to the key-workers who completed the reports on the children and to the
service managers and their deputies for co-ordinating this.
The cover picture was created by one of the young people attending the Stoneside Service
in Glasgow.
Disclaimer
The views expressed in this report are those of the author and should not be taken to represent the views of
Action for Children.
© University of Ulster and Action for Children, 2010. Not to be quoted without permission
20
Confidential – revised draft for comment by members of the Steering Groups
July 2010
Appendix: 1. Rating of children in three services.
(NB The differences among the services on these ratings were not statistically significant)
Means of Communication
Edinburgh Gilmerton
Non-verbal
Limited verbal
Verbal
Total
12
13
7
32
37.5%
40.6%
21.9%
100.0%
9
24
19
52
17.3%
46.2%
36.5%
100.0%
5
4
6
15
33.3%
26.7%
40.0%
100.0%
26
41
32
99
26.3%
41.4%
32.3%
100.0%
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Eating and Drinking
Needs fed
With help
Feeds self
Total
0
10
22
32
.0%
31.3%
68.8%
100.0%
1
17
33
51
2.0%
33.3%
64.7%
100.0%
0
3
12
15
.0%
20.0%
80.0%
100.0%
1
30
67
98
1.0%
30.6%
68.4%
100.0%
Edinburgh Gilmerton Count
%
Glasgow Stoneside Count
%
Cardiff
Breakthrough
Count
%
Total
Count
%
Personal care – dressing, washing
Dependent
With help
Independent
Total
10
19
3
32
31.3%
59.4%
9.4%
100.0%
8
24
19
51
15.7%
47.1%
37.3%
100.0%
3
9
3
15
20.0%
60.0%
20.0%
100.0%
21
52
25
98
21.4%
53.1%
25.5%
100.0%
Edinburgh Gilmerton Count
%
Glasgow Stoneside Count
%
Cardiff
Breakthrough
Count
%
Total
Count
%
Toileting
Edinburgh Gilmerton Count
%
Glasgow Stoneside Count
%
Cardiff
Breakthrough
Total
Count
%
Count
%
Incontinent
Soils
Wets
Continent
Total
11
3
2
15
31
35.5%
9.7%
6.5%
48.4%
100.0%
12
3
5
31
51
23.5%
5.9%
9.8%
60.8%
100.0%
5
0
2
8
15
33.3%
.0%
13.3%
53.3%
100.0%
28
6
9
54
97
28.9%
6.2%
9.3%
55.7%
100.0%
21
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July 2010
2. Ratings of challenging behaviours for each service location
(NB When there is a significant difference in ratings across the three services, the Chi
Square value is given.)
Service
Hyperactivity
Severe
Edinburgh Gilmerton
Count
% within service
Glasgow Stoneside
Cardiff Breakthrough
Total
Count
% within service
14
30
6.7%
23.3%
23.3%
46.7%
100.0%
9
9
13
20
51
17.6%
17.6%
25.5%
39.2%
100.0%
3
5
1
6
15
20.0%
33.3%
6.7%
40.0%
100.0%
14
21
21
40
96
14.6%
21.9%
21.9%
41.7%
100.0%
Screaming
Severe
Edinburgh Gilmerton
Count
% within service
Glasgow Stoneside
Count
% within service
Cardiff Breakthrough
Count
% within service
Count
% within service
Service
Moderate
Mild
No problem
Total
2
2
3
23
30
6.7%
6.7%
10.0%
76.7%
100.0%
2
5
9
34
50
4.0%
10.0%
18.0%
68.0%
100.0%
1
4
4
6
15
6.7%
26.7%
26.7%
40.0%
100.0%
5
11
16
63
95
5.3%
11.6%
16.8%
66.3%
100.0%
Sexualised Behaviours
Moderate
Edinburgh Gilmerton
Count
% within service
Glasgow Stoneside
Count
% within service
Cardiff Breakthrough
Count
% within service
Total
Total
7
Service
Total
No problem
7
Count
% within service
Mild
2
Count
% within service
Moderate
Count
% within service
Mild
No problem
Total
1
6
25
32
3.1%
18.8%
78.1%
100.0%
4
2
43
49
8.2%
4.1%
87.8%
100.0%
3
4
8
15
20.0%
26.7%
53.3%
100.0%
8
12
76
96
8.3%
12.5%
79.2%
100.0%
(More common problem in Cardiff services - Chi Sq 11.4 p<0.05)
22
Confidential – revised draft for comment by members of the Steering Groups
Service
Damage to Property
Severe
Edinburgh Gilmerton
Count
% within service
Glasgow Stoneside
Total
32
9.4%
18.8%
21.9%
50.0%
100.0%
2
5
10
33
50
4.0%
10.0%
20.0%
66.0%
100.0%
2
5
4
4
15
13.3%
33.3%
26.7%
26.7%
100.0%
7
16
21
53
97
7.2%
16.5%
21.6%
54.6%
100.0%
Injury to self
Severe
Count
% within service
Glasgow Stoneside
Total
32
3.1%
12.5%
37.5%
46.9%
100.0%
3
4
12
30
49
6.1%
8.2%
24.5%
61.2%
100.0%
1
4
3
7
15
6.7%
26.7%
20.0%
46.7%
100.0%
5
12
27
52
96
5.2%
12.5%
28.1%
54.2%
100.0%
Injury to another person
Severe
Count
% within service
Glasgow Stoneside
Count
% within service
Cardiff Breakthrough
Count
% within service
Total
Total
15
Service
Edinburgh Gilmerton
No problem
12
Count
% within service
Mild
4
Count
% within service
Moderate
1
Count
% within service
Cardiff Breakthrough
Total
16
Service
Edinburgh Gilmerton
No problem
7
Count
% within service
Mild
6
Count
% within service
Moderate
3
Count
% within service
Cardiff Breakthrough
July 2010
Count
% within service
Moderate
Mild
No problem
Total
1
9
11
11
32
3.1%
28.1%
34.4%
34.4%
100.0%
6
5
9
30
50
12.0%
10.0%
18.0%
60.0%
100.0%
2
6
6
1
15
13.3%
40.0%
40.0%
6.7%
100.0%
9
20
26
42
97
9.3%
20.6%
26.8%
43.3%
100.0%
(This was more of a problem in Cardiff and to lesser extent in Edinburgh than in the
Glasgow service - Chi Sq 19.9 p,0.005).
23
Confidential – revised draft for comment by members of the Steering Groups
Service
Sleep Problems
Severe
Edinburgh Gilmerton
Count
% within service
Glasgow Stoneside
Total
service
32
12.5%
15.6%
50.0%
21.9%
100.0%
9
7
11
24
51
17.6%
13.7%
21.6%
47.1%
100.0%
4
3
3
5
15
26.7%
20.0%
20.0%
33.3%
100.0%
17
15
30
36
98
17.3%
15.3%
30.6%
36.7%
100.0%
Stereotyped/compulsive/ ritual behaviours
Count
% within service
Glasgow Stoneside
Total
No problem
Total
12
8
30
6.7%
26.7%
40.0%
26.7%
100.0%
5
10
20
16
51
9.8%
19.6%
39.2%
31.4%
100.0%
7
2
3
3
15
46.7%
13.3%
20.0%
20.0%
100.0%
14
20
35
27
96
14.6%
20.8%
36.5%
28.1%
100.0%
Count
% within service
Mild
8
Count
% within service
Moderate
2
Count
% within service
Cardiff Breakthrough
Total
7
Severe
Edinburgh Gilmerton
No problem
16
Count
% within service
Mild
5
Count
% within service
Moderate
4
Count
% within service
Cardiff Breakthrough
July 2010
Severe ritualised behaviours were more common in the Cardiff service - Chi Sq 15.5 p<0.05
service
Depressed, withdrawn, lethargic
Severe
Edinburgh Gilmerton
Count
% within service
Glasgow Stoneside
Count
% within service
Cardiff Breakthrough
Count
% within service
Total
Count
% within service
Moderate
Mild
No problem
Total
1
0
7
23
31
3.2%
.0%
22.6%
74.2%
100.0%
2
3
3
40
48
4.2%
6.3%
6.3%
83.3%
100.0%
0
3
2
9
14
.0%
21.4%
14.3%
64.3%
100.0%
3
6
12
72
93
3.2%
6.5%
12.9%
77.4%
100.0%
24
Confidential – revised draft for comment by members of the Steering Groups
July 2010
3. Ratings of change in the children
Service
Change in Communication
Some
improvement
Edinburgh Gilmerton
Glasgow Stoneside
Cardiff Breakthrough
Total
Same
Worse
Total
Count
13
17
0
30
%
43.3%
56.7%
.0%
100.0%
Count
24
22
1
47
%
51.1%
46.8%
2.1%
100.0%
Count
1
10
0
11
%
9.1%
90.9%
.0%
100.0%
Count
38
49
1
88
%
43.2%
55.7%
1.1%
100.0%
Service
Change in feeding
Some
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Same
Total
11
20
31
35.5%
64.5%
100.0%
20
27
47
42.6%
57.4%
100.0%
0
11
11
.0%
100.0%
100.0%
31
58
89
34.8%
65.2%
100.0%
Count
%
Total
improvement
Count
%
Change in personal care
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
Some improvement
Same
Total
13
17
30
43.3%
56.7%
100.0%
24
24
48
50.0%
50.0%
100.0%
1
10
11
9.1%
90.9%
100.0%
38
51
89
42.7%
57.3%
100.0%
25
Confidential – revised draft for comment by members of the Steering Groups
July 2010
Change in continence
Some
improvement
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Cardiff Breakthrough
Total
1
30
36.7%
60.0%
3.3%
100.0%
18
30
0
48
37.5%
62.5%
.0%
100.0%
1
10
0
11
9.1%
90.9%
.0%
100.0%
30
58
1
89
33.7%
65.2%
1.1%
100.0%
Count
%
Total
18
Count
%
Worse
11
Count
%
Same
NB The above differences by services were not statistically significant.
Change in Sleep Problems
Some
Edinburgh Gilmerton
Count
%
Glasgow Stoneside
Count
%
Cardiff Breakthrough
Count
%
Total
Count
%
improvement
Same
Total
14
14
28
50.0%
50.0%
100.0%
12
35
47
25.5%
74.5%
100.0%
0
11
11
.0%
100.0%
100.0%
26
60
86
30.2%
69.8%
100.0%
(Chi Sq 10.4: p<0.005)
NB The differences on other behaviour problems was not significant across the three
services.
26