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Child Care in Practice
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The contacts which families and children with learning disabilities have
with health and social services
Roy McConkey
a
; Dermot McAteer
b
a
University of Ulster and Eastern Health and Social Services Board,
b
Eastern Health and Social
Services Board,
To cite this Article McConkey, Roy and McAteer, Dermot(1999) 'The contacts which families and children with learning
disabilities have with health and social services', Child Care in Practice, 5: 2, 112 121
To link to this Article: DOI: 10.1080/13575279908413163
URL: http://dx.doi.org/10.1080/13575279908413163
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THE CONTACTS WHICH FAMILIES AND CHILDREN
WITH LEARNING DISABILITIES HAVE WITH HEALTH
AND SOCIAL SERVICES
ROY McCONKEY, University of Ulster and Eastern Health and Social Services Board and
DERMOT McATEER, Eastern Health and Social Services Board
SUMMARY
This study summarises all the documented
service inputs which families who had a
child classed as having learning disabilities,
received from one community Health and
Social Services Trust in Northern Ireland
during the 12 month period April 1996 to
March 1997.
Using data obtained from three computer-
based recording systems used in Northern
Ireland - Child Health Record (Module V): L-
CID and Soscare -this paper documents the
extent and type of service provision for this
population. In all, eleven different health
professionals were involved while social
services offered a further five service
inputs. However the services provided
varied across different age groupings of
children and severity of the disability.
Similarities and differences are noted
between the Trust's services and those
reported in a national U.K. survey of
parents with disabled children.
Four key issues are discussed in the light of
the Children (N.I.) Order: the development of
a common database for this population; the
criteria used to determine which children
receive a service and those who do not: the
co-ordination of service inputs; and the
failure of present computer systems to
record the outcomes of service inputs.
INTRODUCTION
The Children (N.I.) Order 1995 placed extra
responsibilities on statutory agencies for
'children in need' and for the first time this
included those with learning disabilities.
I JL
Among the requirements is the need to
develop a register of such children and to
document the services they receive.
Children with severe learning disabilities
and their family carers have various diverse
needs. The children have a higher incidence
of health problems and associated
disabilities such as epilepsy or hearing
problems (Kerr, Fraser and Felce, 1996).
They show marked delays in attaining
functional skills such as independent
mobility, verbal communication and self-care
(Farmer, Rohde and Sacks, 1991). Some
will demonstrate difficult-to-manage
behaviours and their care can place many
extra demands on their families (Felce,
Taylor and Wright, 1994).
Over recent years a range of services have
developed in response to these needs in
accord with government policy (Department
of Health and Social Services, 1996). In
Northern Ireland, such services are largely
provided through Health and Social Service
Trusts (H&SST) with Education and Library
Boards as the other main provider.
However there is no centralised database
which registers the children nor one which
documents the services they are receiving
or require. Such data could be used to
inform macro level planning.
This study explores the feasibility of
developing a register of children with
learning disabilities from existing computer-
based recording systems. It also aims to
describe the range of services currently
being provided to these children and their
families by one H&SS Trust and to
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THE CONTACTS WHICH FAMILIES AND CHILDREN WITH LEARNING DISABILITIES HAVE WITH
HEALTH AND SOCIAL SERVICES
determine the variations in the services
provided according to the child's age and
severity of disability. Furthermore the
findings could be contrasted with those
reported in a national U.K. survey of over
1,000 parents' contacts with professionals
(Beresford, 1995).
The findings would have wider applicability
beyond this one geographical area. They
would highlight the potential discrepancies
among the records kept on different
databases; they would provide an indication
of the range and quantum of services likely
to be needed by this population and they
would demonstrate the variations in the
proportions of children receiving each type
of service within one geographical area.
That said, the data could not be considered
representative of services offered
elsewhere in these islands until similar
studies are done in other areas.
METHOD
One Community H&SS Trust in Northern
Ireland was chosen for the study. The Trust
served a mixed urban and rural population
of around 140,000 persons and had a
budget of 6.4 million for learning disability
services in the 1996/7 financial year. As
with other Trusts in Northern Ireland, three
different computer-based recording systems
were currently in use and the chosen Trust
had a reputation for maintaining
comprehensive records. These were:
Module V of the Child Health Record A
Northern Ireland regional system which
records details of a child's disabilities
and uses a four point scale to indicate the
degree of severity (mild, moderate, severe
and profound).
Local Community Information Development
(L-CID): This system operates in two
health boards and was started in 1991. It
is an activity management system with
the dual aims of monitoring and managing
community health services and monitoring
the Trust's compliance with contracts. The
system registers clients and records
episodes of care offered by health
professionals working in community care
programmes. It also records the date,
location and nature of the contacts within
these episodes.
Soscare: The third system originated in
the late 1980s and operates throughout
Northern Ireland. It registers clients
currently in receipt of social services and
records the start and end date of all
episodes of care provided. It too is
designed to assist with the management
of social services and monitoring contract
com pl iance.
The sample
Children listed as having a learning disability
on any of the three systems and who were
aged 19 years or under on April lSt 1997
formed the study population. Their names
were then cross-checked across the three
listings. To our knowledge, this is the first
time an exercise of this sort had been
attempted and it proved time-consuming.
The lack of a common identifier across the
three recording systems meant that cross-
referencing had to be based on names and
dates of birth. This task was compounded
by the presence of duplicate records in the
recording systems (around 3%).
RESULTS
Comparisons of Populations on the Three
Recording Systems
A total of 753 children (aged up to 20 years)
in the Trust area were recorded on the Child
Health Record as having a learning disability.
The L-CID system had 297 records of
children with learning disabilities and
Soscare a total of 189 such children. The
overlaps among the three systems are
shown in Table 1.
113
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ROY McCONKEY and DERMOTT McATEER
ysterns on which the
child was recorded
Numbers
Child Health Record Only
L-CID Only
Soscare Only
L-CID, Soscare and Child Health
Total
606
58
1
96
753
L-CID and Soscare
L-CID and Child Health
Soscare and Child Health
10-14 years
15 19 years
Overall
92
51
0
130 164 36 1 331
59 152 33 0 244
308 359 79 7 753
I
in all, a total of 904 children and families
were recorded in one of the three systems.
Qf these, only 11per cent of children were
recorded on all three systems; two-thirds
were recorded only on the Child Health
Record and 17 per cent were recorded as
receiving some form of health or social
service because of their learning disability
but they were not recorded on the Child
Health Record.
individuals as the summary statistics
provided by the Department of Education
(Northern Ireland) could not be broken down
by H&SS Trust area. They are grouped by
Education and Library Boards and the
boundaries are not coincident with those of
Trusts.)
Age variations: In all three systems the
highest proportion of recorded clients are
aged between 10 and 14 years with the
proportion highest in the Child Health
Record (44% of all records; compared to
33% in both LClD and Soscare). By contrast
L-CID has a higher proportion of under fives
recorded (8.6% of all records) compared to
Soscare (7.7%) and Child Health Record
(3%). The proportions of five to nine year
olds are also higher in Soscare (28%) and L-
CID (27%) than the Child Health Record
(22%) but for 15-19 years olds, all three
systems have the same proportion (32%).
Variations by degree of disability: Only the
Child Health Record contains a rating of the
childs degree of disability. Table 2
summarises the number of children within
each age band broken down by the recorded
level of disability and Table 3 presents the
percentages of these children (N=152;
18.5%) who were recorded as having
(Note: Attempts were made to cross-
reference these records with those held by
education but this could not be done for
received at least one service from health or
social Services.
TaMe 2: The numbers of children recorded on the Child Health Record broken
down by age and level of disability.
I Mild Moderate Severe Profound Total
0-4 years
59 years
18 4 0 1 23
39 10 5 155
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THE CONTACTS WHICH FAMILIES AND CHILDREN WITH LEARNING DISABILITIES HAVE WITH
HEALTH AND SOCIAL SERVICES
Community Medical Officer *
Community Dental *
Speech & Language Therapy *
Occupational Therapists *
Health Visitor *
Physiotherapy
Social Worker
Audiology *
Clinical Psychology
Chiropody
District Nursing
Community L.D. Nursing*
Table 3: The percentage of children within each age/disability grouping
who were i n receipt of a health or social service.
54% 75% 85% 81% 79%
11% 26% 54% 54% 43%
8% 48% 39% 29% 36%
39% 59% 31% 16% 35%
69% 51% 28% 16% 34%
96% 58% 6% 1% 26%
23% 22% 28% 19% 23%
4% 17% 14% 3% 11%
27% 4% 2% 3% 5%
8% 9% 4% 1% 5%
4% 3% 4% 7% 4%
0% 5% 2% 3% 3%
Mild Moderate Severe Profound
04 years 13% 25% 100%
5-9 years 6% 49% 100% 100%
10-14 years 2% 17% 97% 100%
1519 years 2% 9% 79% 100%
Overall 4% 17% 90% 100%
As Table 2 shows, nearly half of the children
in the Child Health Record were recorded as
having a mild learning disability but only 4
per cent of these children had received a
service from health and social services (see
Table 3). By contrast all the children
classed as profoundly handicapped had
received a service, as did those with severe
learning disabilities aged five to nine years.
Indeed Table 3 suggests that services are
more likely to focus on children aged five to
nine years than those who are older;
particularly those over 15 years.
Professional Inputs
A total of 294 children were recorded as
having received at least one health or social
service episode during the twelve month
period. Table 4 summarises the percentage
of children within each age grouping who
had received at least one episode of care
from the professionals listed. The final
column gives the percentage of children in
the total learning disabled population who
received that service.
Table 4: The percentage of children in each age group who received at least one
episode of care from the listed professionals.
Professionals Wy r s 59y r s 1014y r s 1519y r s Total
N=26 N=81 N=lOO N=90 N=29 7
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ROY McCONKEY and DERMOTT McATEER
As Table 4 shows there are marked and
statistically significant differences across
the age groupings for certain professionals.
The proportion of children seen by health
visitors, occupational therapists and
audiologists falls with increasing age;
whereas it increases for community medical
officers and community dental services. For
speech and language therapy and
community learning disability nursing the
highest proportion of children seen is
between five and nine years. There are no
age differences in contact with
physiotherapists, social workers, clinical
psychology, chiropody and district nursing.
in sum, the majority cf children aged
between nought and four years will see
health visitors and occupational therapists;
for children aged five to nine years the
majority are seen by community medical
officers, speech and language therapists,
health visitors and occupational therapists.
For children aged 10 and over, the majority
are seen by community medical officers and
community dental services.
Social services: The main social services
recorded on Soscare records in addition to
active social worker involvement were
occupational therapy (11% of children) and
aids and appliances (8% of children). In
neither instance did this vary significantly
across age groups. Three children (all over
15) were recorded as receiving respite
provision and one person as attending a day
centre. The former is certainly an
underestimate as data provided by the Trust
for another study identified 33 children who
had received an overnight respite break out
of the family home (McConkey and Adams,
2998). No one was recorded as being in
receipt of home help services.
Variations by severity of disability: On the
Child Health Record a rating is made of the
severity of each childs disability. Hence
using the subset of 152 children recorded
on this system, it was possible to explore
relationships between severity of disability
and professional inputs. Children whose
disability was rated as severe and profound
were more likely than children with
moderate and mild ratings to see learning
disability nurses (61% and 18%
respectively); occupational therapists (50%
and 28%); physiotherapists (51% and 7%)
and social workers (27% and 5%). For all
other professionals, notably community
medical officers, dental services, health
visitors, and speech and language
therapists, the differences were not
significant.
Professional Contacts
The L-CID system also records information
on the nature of the contacts provided by
each of the professionals to people with
learning disabilities. The codings for each
profession are unique as they have been
chosen to reflect the particular contribution
of that professional. Table 5 summarises
the most common contacts for six
professionals in order to give an indication
of the variety of inputs recorded for one
year. The three professions with the
largest diversity of inputs appear to be
learning disability nurses, health visitors
and occupational therapists.
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THE CONTACTS WHICH FAMILIES AND CHILDREN WITH LEARNING DISABILITIES HAVE WITH
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Table 5: The percentage of most frequent type of contacts recorded by
certain professionals to children with learning disabilities.
~
Community Dental Services
Treatment 37% Reexaminations 33%
Preventive 36% Medical exam 33%
Conservation 7% Assessment 15%
Assessment 5% Vaccinations 5%
Community Medical Oftlcers
Learning Dlsabiilty Nurses 1
Tube-feeding 16%
Carer advice 11%
Sort/give medication 10%
Health monitoring 10%
Patient observation 7%
Continence promotion 5%
Behaviour advice 5%
Feeding problems 4%
Health Visitors 2
Advice/Su pport 24%
Feeding problems 8%
Developmental Assess. 9%
Hospital follow-up 7%
Weight 6%
Medication advice 4%
Telephone contact 4%
Occupational Therapy 3 Speech & Language Therapy Physiotherapy
General treatment 51% Faceto-face intervention 61% Neuro, e.g. Bobath 52%
Group contact 7% Teach patient/other 10% Movement/Exercise 18%
Multidis. Intervention 7% Carer advice 8% Suction 6%
Aids and equipment 5% Group Contact 7% Respiratory Methods 6%
Assessments 4% Multidis. Intervention 5% Carer advice 5%
Splint/strapping 4%
Source: L-CID Records
Z Other recorded contacts include seizure management, assessments, multidisciplinary review and behaviour therapy.
2. Other recorded contacts include behaviour advice, child protection, physical handicap, social problem help and
screening for speech and hearing.
3. Other recorded contacts include checking adaptations, sensory treatments, independence training.
117
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ROY McCONKEY and DERMOTT McATEER
Number of professionals seen
Number of Different Professionals
A count was made of the number of different professionals seen by each child during the 12
month period. The maximum was ten (one person) with seven per cent of children seeing no-
one. However as the following table shows, the numbers varied across age-groups with
children under 10 more likely to see four or more professionals whereas children over 10
were more likely to see one to three professionals (Chi Square p<O.Ol).
~ y r s 59y r s 1014y r s 1519y r s rota/
(N=26) (N=81) (N=lOO) (N=90) (N=297)
TaMe 6: The percentage of children in each age group by the number of professionals seen
In 8 twelve month period.
None
1
2-3
4c
4% 9% 7% 7% 7%
12% 10% 16% 24% 16%
42% 31% 43% 52% 42%
42% 51% 34% 17% 34%
Source: L-CID and Soscare combined records.
Variations by severity ratings: Once again,
the subset of children recorded on the Child
Health Record, enabled an analysis to be
undertaken of the relationship between
severity of disability and the number of
professionals seen. Of the children with
severe and profound disabilities 59 per cent
were seen by four or more professionals, 30
per cent by two or three professionals and
11 per cent by one. Those with moderate
disabilities showed a significantly different
pattern; 21 per cent saw four or more
professionals; 49 per cent two or three
professionals and 30 per cent only one (Chi
Square p<O. OOl ) . However of the 14
children rated as having mild disabilities; 57
percent saw four or more professionals and
the remainder (43%} were seen by two or
three. This suggests that the rating of mild
i s given to those children who may be
difficult to diagnose, particularly as 75 per
cent of these children were under 10 years
of age, but other explanations are worthy of
further investigation.
DISCUSSION
This study raises four important issues in
regard to service provision for families and
children with learning disabilities and the
obligations which are placed on Health and
Social Services Boards and Trusts by the
Children (N.I.) Order. First, the efficacy of
present recording systems for children with
learning disabilities. Second, the criteria
used to determine which children receive a
service and those who do not. Third, the
co-ordination of service inputs and fourth,
the failure of present systems to record the
outcomes of service inputs.
Recording Systems
The three recording systems in use across
Northern Ireland all have diverse origins and
none were specifically designed for children
with learning disabilities. This study has
highlighted the lack of congruency across
the systems. For example, the Child Health
Record registered twice or three times as
many children as having a learning disability
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THE CONTACTS WHICH FAMILIES AND CHILDREN WITH LEARNING DISABILITIES HAVE WITH
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than did L-CLD or Soscare but equally there
were over 150 children recorded on the latter
two systems who were not on the Child
Health Record.
Although it proved possible to compile a
common database of children with learning
disabilities, this was hampered by the lack of
a common identifier in the three computer
systems and the different ways records are
kept in the systems. In the end the task had
to be done manually.
But a more fundamental issue in developing
a common database is the rationale for
having it. The primary function according to
the Children Order legislation in Northern
Ireland is to determine those in need of
service and to provide a means for recording
the services received. None of the existing
databases achieve these dual aims.
A related issue is the inclusion criteria to be
used for entering a child as learning
disabled. In the past, the criteria were
based on childrens characteristics, most
notably I Q and adaptive behaviour
(McConkey, 1997). Latterly, modern thinking
has taken other criteria into account, such as
the impact of the childs environment on
their functioning and the supports needed to
improve the persons functional capabilities
(Luckasson et a/., 1992). Indeed the concept
of an individuals or familys needs for
services will probably prove to be the most
useful basis for including a person on a
learning disability database. Thus if a person
is judged to have a need which could be met
by the services provided through the learning
disability programme of the Trust, then they
should be entered on to the database. This
is the basis for the national database on
learning disability that operates in the
Republic of Ireland (Health Research Board,
1996).
The results of the present study clearly
demonstrate the need for an urgent review of
information systems currently used in
Northern Ireland so that a consistent source
of information is available to service
planners. At a minimum the goal should be
to ensure consistency across Northern
Ireland in the definitions used for registering
children (and their families) and in recording
their needs.
Criteria for Receiving a Service
In all, eleven different health professionals
were providing services to children with
learning disabilities and their families. In
addition social services offered a further five
service inputs. Thus the learning disability
programme provided by any H&SS Trust is
better viewed as an amalgam of services
rather than as a single entity. This range of
service provision appears to be more
comprehensive than that offered by other
Programmes of Care in the Trust, such as
Child Health, Physical Disability, Mental
Health and Elderly (McAteer, 1997).
There are some similarities but also
important differences between the
proportion of families receiving services from
the Trust and those reported in a national
survey of chi Id ren with severe d i sa bi I it ies
whose families were in receipt of support
from the Rowntree Fund (Beresford, 1995).
Contact with occupational therapists and
speech and language therapists was much
the same but fewer children in the Trust had
contact with a physiotherapist than in the
national survey (23% versus 53%
respectively). This was also the case for
social workers (11% versus 46%),
psychologists (5% versus 22%) and district
nursing (3% versus 25%). However the Trust
provided more contact with community
medical officers (79% versus 66%) and
health visitors in the preschool years (96%
versus 86%). (Bereford, 1995 does not
report contacts with dental services, learning
disability nursing, audiology or chiropody).
However the pattern of service provision in
the Trust varied across the children and
families. No one received all the services;
119
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although 42 children had contact with six or
more different professionals. The data
suggests that the type of service as well as
the number of services received varied
according to age and that children with more
severe disabilities were more likely to receive
certain services and to have four or more
service inputs. But these general
relationships did not hold for everyone.
This raises the issue as to the criteria which
are used to determine whether or not a
family receives a particular service. In part
this will be determined by the availability of
the service within a Trust. For example a
shortage of therapists will obviously curtail
the service. This i s the most likely
explanation for the discrepancies between
the results of this study and the national
survey which were noted above, although
local policies on deployment of professional
resources may also have an effect.
But if there were unlimited resources, would
every child with a learning disability need to
receive every service? This debate is not just
a matter for each profession but requires
some form of co-ordinated response from
service managers, especially as issues of
equity in service delivery are involved and
the determination of priorities when
resources are limited.
Cwrdi natl on of Service inputs
Families have often voiced their displeasure
with the apparent lack of communication and
co-ordination among professional workers
(Beresford, 1995). Although this may not
hold for the population of families covered by
this study, the potential for it to happen is
certainly there given that two or more
professionals saw three quarters of the
children during the 12 month period.
Moreover, this data probably underestimates
the social services families received and it
does not include contacts with GPs or acute
hospital services. (In Berefords (1995)
survey, 91% and 81% of families respectively
120
had contact with these services). Contacts
with any educational and school-based
services or those provided by voluntary
organisations were also not counted. Indeed
we are not aware of any studies of learning
disability services which have attempted to
track the total quantum of service inputs
including social security benefits. Hence
cost-efficiency studies have yet to be
undertaken.
The main proposal for improving co-
ordination has been the appointment of a
named person, key-worker or care
manager for each person (DHSS, 1996) yet
Beresford (1995) found that two-thirds of
families in the national survey did not have a
named key-worker. To date there has been
little agreement as to which of the existing
professions is best placed to undertake this
role. Among the main contenders are GPs,
community medical officers and social
workers although the role could be shared
with other professionals especially if the
named person were to change as the child
and familys primary needs altered. This
debate is crucial to the development of cost-
effective services.
Service Outputs
Arguably the biggest criticism of existing
databases is that they only record service
inputs or activity levels without giving any
indication of the outcomes achieved. For
example, is a child no longer getting speech
and language therapy because it has been
effective whereas another child continues to
have it even though it is producing no
apparent outcome?
The aspiration towards evidence-based
practice is accepted in health services and
the debate is underway in social services.
Integral to this is the development of suitable
measures for assessing outcomes of service
inputs but a starting point would be a clear
delineation of the needs which the
intervention is designed to address. If these
were shared across different professions
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THE CONTACTS WHICH FAMILIES AND CHILDREN WITH LEARNING DISABILITIES HAVE WITH
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and with family carers, then more focused
and relevant service interventions are likely
to be developed that span the traditional
demarcations of health and social services.
This reinforces the need for regular individual
child and family reviews at which needs can
be agreed, service interventions planned and
evaluations of progress undertaken. The
challenge for service planners and contractors
would be to collate this data for groupings of
individuals such as those in the learning
disability programme (Felce et a/, 1994). Such
information systems would have the potential
to define the needs of children and families
which are being met and those which are
unmet, while identifying the services which
are effective and those which are not. The
focus in service contracting would then shift
from monitoring activity levels to producing
relevant outcomes for clients.
Finally the data presented in this paper must
be treated with some caution. The
information presented is for recorded
contacts only and it is likely that some
contacts and services are not recorded. It
was not possible to determine the extent of
this and whether it is consistent across
services. Likewise the data is for service
contacts during a twelve month period and
they do not reflect services offered in past
years. A much more extensive study would
be required to monitor this although it would
have had the added benefit of monitoring
changes in services over time. A prospective
study of this type would help to
monitor service developments and with
improvements in computer recording
systems this could be undertaken routinely
by Trusts as part of their auditing exercises.
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Beresford, B. (1995) Expert Opi ni ons: A
nat i onal survey of par ent s car i ng f or a
severe& disabled child. Bristol: Policy Press.
Department of Health and Social Services
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8400949, C10,14575.
Farmer,R., Rohde, J . and Sacks, B. (1991)
Dimensions of Ment al Handicap. London:
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Felce, D., Taylor, D. and Wright, K. (1994)
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Kerr, M., Fraser, W. and Felce, D. (1996)
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Luckasson, R. e t a1 (1992) Ment al
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McAteer, D. (1998) Information requirements
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McConkey, R. (1997) Intellectual Disability.
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A Century of Psychology. London: Routledge.
McConkey, R. and Adams, L. (1998) Short
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Acknowledgements
Our sincere thanks to the personnel in the Trust for
their active moperation and patient handling of our
enquiries and also to Marisa Srnyth for assistance with
data analysis. This study formed part of a dissertation
submitted by the second author for the Masters Degree
in Health and Social Services Management at the
University of Ulster.
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