People with profound and multiple learning disabilities:
A review of research about their lives
Dr. Steven Carnaby
DECEMBER 2004
A report commissioned by MENCAP
People with profound and multiple learning disabilities: A review of research about their lives
Contents
Introduction
Page
2
Methodology
3
Defining the population
4
Themes emerging in the research literature
Theme 1: Service design and quality of life
6
Theme 2: Choice and decision-making
8
Theme 3: Communication
9
Theme 4: Meeting personal needs - Therapeutic interventions,
promoting independence and skill teaching
11


Promoting independence
Evidence base for the use of specific ‘therapeutic’ approaches
11
12

Provision of physical care and support
13
Theme 5: Sensory needs
15
Theme 6: Staff training and staffing issues
17
Theme 7: Parent and carer issues
18




18
18
19
20
General observations
Wishes of parents and carers: Education and school provision
Parents’ and carers’ experiences of statutory services
Impact on the family
Theme 8: Mental health and well being
22
Theme 9: Challenging behaviour
23
Theme 10: Physical health
24
Theme 11: Personal relationships and sexuality
25
Suggestions for future research
27
1
People with profound and multiple learning disabilities: A review of research about their lives
Introduction
This report aims to present an overview of the literature published about the lives of
people with profound and multiple learning disabilities (PMLD), their carers and
families. It draws from a vast range of sources including published papers in academic
journals, published reports from charities and other voluntary sector organisations,
government documents and practitioners’ handbooks.
The term PMLD is used throughout the report to denote people who have profound
learning disabilities and additional disabilities. A fuller explanation of this term is
provided on page 4. One difficulty with conducting a review of literature for this
population is that there remain differences of opinion with regard to terminology.
While terms such as ‘profound disability and multiple impairment’ or ‘profound
learning disabilities and additional support needs’ are likely to refer to the same group
of individuals, it is less clear whether ‘complex needs’ or ‘high support needs’ are
always being used in the same context. In the interests of consistency and reliability,
the literature cited here has been included largely on the premise that it uses the word
‘profound’ when describing the level of cognitive impairment and also makes
reference to additional physical or sensory disabilities.
Other research relating to the lives of people with learning disabilities more generally
will clearly be relevant to people with PMLD and this needs to be borne in mind.
While the material presented here focuses on this group of individuals in particular, it
needs to be read within the context of the wider learning disability literature. For
example, material concerning the principles and values underpinning learning
disability services - such as choice, individualisation of approaches and the
importance of empowerment - is equally important here, but has not been cited
because it does not usually make specific reference to people with PMLD.
The task of capturing everything written as ‘current thinking’ about people with
PMLD is a challenging one and omissions are likely. In an attempt to address this, the
literature reviewed has been divided into themes. It is hoped the dominant topic areas
in PMLD have been at least mentioned in passing, if not reviewed in more depth due
to time and resource limitations.
The review of themes begins with the more general (e.g. quality of life and service
design issues, issues for parents and carers) and moves on to the more individual and
specific (e.g. clinical interventions and approaches). The report concludes with
observations about potential gaps in the published literature and suggests directions
for future research and exploration.
2
People with profound and multiple learning disabilities: A review of research about their lives
Methodology
A literature search was carried out using Internet access via the academic journal
search engine located at www.ingenta.com. The first issue to be tackled here
concerned terminology. Members of the target group for this report are described in a
variety of ways in both practitioner-focused and academic texts and journals, a matter
expanded upon below. It was considered that the two specific keywords required were
‘profound’ (in relation to level of learning disability or cognitive impairment) and
‘multiple’ (as signifying additional disabilities experienced by the individual).
The following phrases were used as keywords:

‘people with profound and multiple learning disabilities’ (and configurations of
these words)

‘people with profound intellectual disabilities and multiple impairment’ (and
configurations of these words)

‘people with severe and profound learning disabilities’
These descriptors were used to search editions of the following relevant journals:

Journal of Intellectual Disability Research

Journal of Applied Research in Intellectual Disability

Disability & Society

British Journal of Learning Disabilities

Journal of Learning Disabilities

Tizard Learning Disability Review
In addition, searches were made of key academic and professional practice texts
where appropriate.
Full references are provided as footnotes throughout the report.
3
People with profound and multiple learning disabilities: A review of research about their lives
Defining the population
People with PMLD form a small but significant section of the wider population of
people with learning disabilities. While the Diagnostic and Statistical Manual - 4th
Edition (DSM – IV: published by the American Psychiatric Association, 1994) states
that ‘the group with profound mental retardation [sic] constitutes approximately 1%2% of people with mental retardation’, in practice prevalence is difficult to establish
as figures vary with the type of definitions adopted.
The definitions of profound intellectual disability most often cited include having an
IQ of below 20 (World Health Organisation, 1992), below 20-25 (DSM – IV), or
functioning with an IQ estimated to be five standard deviations from the norm1. All of
these references to IQ are notional, as clinicians conducting assessment of cognitive
ability would find it a significant challenge to achieve accurate and reliable results in
this range of functioning. While using IQ scores is problematic and arguably
inappropriate, its use in this notional way can be helpful in appreciating the ways in
which levels of understanding may differ between people with profound disabilities
and those with severe disabilities, as well as from those with mild learning
disabilities.
Other literature takes a more functional approach to describing PMLD. For example,
Jean Ware2 suggests that people with a profound learning disability have a
‘…degree of learning difficulty so severe that they are functioning at a developmental
level of two years or less (in practice well under a year)’.
The World Health Organisation3 suggests that people with PMLD are
‘…severely limited in their ability to understand or comply with requests or
instructions. Most such individuals are immobile or severely restricted in mobility,
incontinent, and capable at most of only the rudimentary forms of non-verbal
communication.’
Finally, people with PMLD can be described or defined in terms of their support
needs. Such definitions include the following:
 Being a member of ‘High Dependency Group IV’ - the criteria for which includes
multiple physical disabilities, double incontinence and severe epilepsy4
1
Hogg, J. & Sebba, J., (1987). Profound retardation and multiple impairment: Development and
learning. Aspen
2
Ware, J. (1996) Creating Responsive environments for people with profound learning and multiple
disabilities. London: David Fulton.
3
World Health Organisation, (1992). See P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton.
4
National Development team, (1985). See P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton.
4
People with profound and multiple learning disabilities: A review of research about their lives

Requiring constant help and supervision and having little or no ability to meet
personal care needs5

Requiring a highly structured environment with constant aid and supervision and
an individualised relationship with a caregiver in order to attain optimal
development6
Profound learning disabilities and multiple impairment can often be traced to
extensive damage that results from what are often identifiable neurological
conditions7. Individuals may experience any one or more of severe physical disability,
severe visual impairment, severe hearing impairment, epilepsy and other complex
health conditions for which medication is usually required e.g. chronic pulmonary
disease8. There may also be impairments in the ability to detect touch, pressure,
temperature and pain9. The significant brain damage leading to profound cognitive
impairment increases the likelihood of the individual experiencing additional
disabilities10.
In turn, their communication skills are also likely to be at an early developmental
level, involving signals such as reflex responses, actions, sounds and facial
expressions11. People with profound learning disabilities are reported to have lower
receptive communication skills than individuals with severe learning disabilities12.
5
World Health Organisation, (1992). See P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton.
6
Diagnostic and Statistical Manual - 4th Edition, American Psychiatric Association, 1994
7
Diagnostic and Statistical Manual - 4th Edition, American Psychiatric Association, 1994
8
Hogg, J., (1992). The administration of psychotropic and anticonvulsant drugs to children with
profound intellectual disability and multiple impairments. Journal of Intellectual Disability Research,
36, 473-488.
9
Oberlander, T.F., O’Donell, M.E. & Montgomery, C.J., (1999). Pain in children with significant
neurological impairment. Journal of Developmental and Behavioural Paediatrics, 20, 235 - 243
10
Foundation for People with Learning Disabilities, (2001). Learning disabilities: the fundamental
facts. London: Foundation for People with Learning Disabilities.
11
Porter, J., Ouvray, C., Morgan, M. & Downs, C., (2001). Interpreting the communication of people
with profound and multiple learning difficulties. British Journal of Learning Disabilities, 29, 1, 12-16.
12
Cascella, P., (2004). Receptive communication abilities among adults with significant intellectual
disability. Journal of Intellectual and Developmental Disability, 29, 1, 70-78
5
People with profound and multiple learning disabilities: A review of research about their lives
Themes emerging in the research literature
Theme 1: Service design and quality of life
In Britain, the Government White Paper Valuing People13 set out an agenda for
change, establishing the principles of choice, empowerment, independence and rights
as the cornerstones of a strategy for enhancing the social inclusion of people with
learning disabilities. This document has been commended for confronting many of the
issues faced by those using, commissioning and providing services and the interested
parties are keen to see evidence of its impact.
While clearly addressing a wide range of important areas, the White Paper has also
been criticised for its approach towards people with profound disabilities.
Specifically, it is claimed that in using inconsistent terminology such as ‘complex
needs’, ‘the most severely disabled’ and ‘people with complex and multiple
disabilities’, Valuing People does not recognise the particular marginalisation of
people with profound disabilities and does not set relative objectives for this group 14.
This observation supports arguments that people with PMLD are a small but ‘ignored
minority’15.
Aside from the philosophical and ideological debates, much of the literature following
this theme is concerned with the configuration of services and specifically the ways in
which services can best promote acceptable levels of engagement and activity. A
range of studies suggest the greater an individual’s level of cognitive impairment, the
more likelihood there is of observers recording that individual engaged in lower levels
of activity16 and experiencing poorer quality of life in general 17. There appears to be
an inverse system of care where individuals in staffed residential settings with greater
skills receive more staff support18.
The nature of provision continues to be debated i.e. what the environment needs to be
like and the best combination of people utilising that environment. One key aspect of
13
Department of Health, (2001). Valuing People. HMSO
PMLD Network, (2001). Valuing people with PMLD. London: Mencap.
15
Samuel, J. & Pritchard, M., (2001). The ignored minority: meeting the health needs of people with
profound learning disability. Tizard Learning Disability Review, 6, 2, 34-44.
14
16
Pettipher, C. & Mansell, J., (1993). Engagement in meaningful activity in day centres: an
exploratory study. Mental Handicap Research, 6, 263-274; Rose, J., Davis, C. & Gotch, L., (1993). A
comparison of the services provided to people with profound and multiple disabilities in two different
day centres. British Journal of Developmental Disabilities, 39, 83-94; Perry, J. & Felce, D., (1994).
Outcomes of ordinary housing services in Wales: objective indicators. Mental Handicap Research, 7,
286-311; Jones, E., Perry, J., Lowe, K., Toogood, S., Dunstan, F., Allen, D. & Pagler, J., (1999).
Opportunity and the promotion of activity among adults with severe intellectual disability living in
community residences: the impact of training staff in active support. Journal of Intellectual Disability
Research, 43(3), 164-178.
17
Perry, J. & Felce, D., (2003). Quality of life outcomes for people with intellectual disabilities living
in staffed community housing services: a stratified random sample of statutory, voluntary and private
agency provision. Journal of Applied Research in Intellectual Disabilities, 16, 11-28.
18
Hatton C., Emerson E., Robertson J., Henderson D. & Cooper J., (1996). Factors associated with
staff support and resident lifestyle in services for people with multiple disabilities: a path analytic
approach. Journal of Intellectual Disability Research, 40,5, 466-467.
6
People with profound and multiple learning disabilities: A review of research about their lives
the debate is whether integrated or semi-segregated settings are of more benefit.
While there is evidence to suggest that smaller-scale provision is linked with higher
levels of adaptive behaviour when compared to that observed in hospital or
institutionalised settings19, early studies showed little if any increase in the level of
community integration20. One study comparing changes in lifestyle for people with
‘profound handicaps’ suggested that while levels of activity and overall quality of life
improved, there was little evidence of integration or of individuals being supported in
ways that increased their competence21. Unfortunately, this trend has continued, with
research still indicating that much is to be done before people with PMLD can be said
to be participating in their local communities in any meaningful way22.
One study comparing support offered in a specialised service with that available in an
integrated setting suggests that service users receive more contact from staff in a
‘specialist’ setting23. Elsewhere, studies have explored integrated service
environments, using support from more able peers in a college setting who were
coached in interactive and support strategies tailor-made to the individual with
PMLD24.
People living in community based housing schemes are reported to enjoy a
significantly greater quality of care and quality of life than participants living in
residential campuses, where the total costs of provision are cheaper. These differences
can be accounted for by significantly greater direct staffing costs in the communitybased services25.
Research has also explored the nature of employment and occupation. A study
comparing supported employment for people with severe and profound disabilities
and day support within a Special Needs Unit (SNU) suggests that employment is
associated with greater receipt of assistance, higher task-related engagement in
activity and more social contact from people other than paid staff. SNU activities
19
Mansell, J., (1994). Specialized group homes for persons with severe or profound mental retardation
and serious problem behaviour in England. Research in Developmental Disabilities, 15, 5, 371-388.
20
Bratt, A. & Johnston, R., (1988). Changes in lifestyle for young adults with profound handicaps
following discharge from hospital care into a ‘second generation’ housing project. Mental Handicap, 1,
1, 49-74.
21
Bratt, A. & Johnston, R., (1988). Changes in lifestyle for young adults with profound handicaps
following discharge from hospital care into a ‘second generation’ housing project. Mental Handicap
Research, 1, 1, 49-74.
22
Myers, F., Ager, A., Kerr, P. & Myles, S., (1998), Outside Looking in? Studies of the Community
Integration of People with Learning Disabilities, Disability & Society, 133(3), 389-343.
23
Rose, J., Davis, C. & Gotch, L., (1993). A comparison of the services provided to people with
profound and multiple disabilities in two different day centres. British Journal of Developmental
Disabilities, 39, 83-94
24
Hunt, P., Alwell, M., Farron-Davis, F. & Goetz, L., (1996). Creating socially supportive
environments for fully included students who experience multiple disabilities. Journal of the
Association for Persons with Severe Handicaps, 21, 2, 53-71.
25
Emerson E., Robertson J., Gregory N., Kessissoglou., S., Hatton C., Hallam A., Knapp M., Järbrink
K., Netten A. & Linehan C., (2000). The quality and costs of community-based residential supports and
residential campuses for people with severe and complex disabilities. Journal of Intellectual and
Developmental Disability, 25, 4, 263-279.
7
People with profound and multiple learning disabilities: A review of research about their lives
were associated with greater receipt of social contact. Supporting people in
employment was more expensive than providing support in the SNU26.
Theme 2: Choice and decision-making
Choice continues to be a major concern for those responsible for service provision to
people with learning disabilities and it is one of the cornerstones of Valuing People
(Department of Health, 2001). While initial assumptions and instincts might lead one
to think otherwise, a substantial body of research suggests that many people with
PMLD are able to make choices reliably. However, available evidence also indicates
that ways in which choices are presented is crucial to the outcome - for example
asking an individual to choose between two options, rather than presenting a single
object27.
This area of work is highly valuable. Enabling a person to indicate preferences can
also lead to more effective teaching and learning, as preferred objects or events can be
used as reinforcement during the learning process28. When individuals are able to
make choices relating to leisure items, their rates of interacting with those items
increases29.
There is also some evidence to suggest that individuals can be supported to make
choices in tangible ways that have greater impact on the conduct of activity and the
wider environment through the use of sensory reinforcement and a range of
technologies30. However, more work is needed in this area to enable all people with
PMLD to make reliable choices and learn through the use of reinforcers.
There appears to be little literature available for support staff and family carers about
the different approaches that might be required when thinking specifically about
enabling people with PMLD to make meaningful choices. For example, the concept of
intentional communication - communicating to others intentionally in order to have
needs met – can be a key element of choice making and a skill that may be under
developed in people with PMLD. Despite this, references to intentionality and preintentionality are conspicuous by their absence in literature about good quality
support.
26
Shearn J.; Beyer S. & Felce D., (2000). Journal of Applied Research in Intellectual Disabilities, 13,
1, 29-37.
27
Lancioni, G.E., O’Reilly, M.F. & Emerson, E., (1996). A review of choice research with people with
severe and profound developmental disabilities. Research in Developmental Disabilities, 17, 5, 391411; Windsor, J., Piche, L.M. & Locke, P.A., (1994). Preference testing: a comparison of two
presentation methods. Research in Developmental Disabilities, 15, 439-455.
28
See for example: Smith, R.G., Iwata, B.A. & Shore, B.A., (1995). Effects of subject- versus
experimenter-versus-selected reinforcers on the behaviour of individuals with profound developmental
disabilities. Journal of Applied Behaviour Analysis, 28, 61-71.
29
Realon, R.E., Favell, J.E. & Lowerre, A., (1990). The effects of making choices on engagement
levels with persons who are profoundly multiply handicapped. Education and Training in Mental
Retardation, September, 299-305.
30
See Bunning, K., (1998). The role of sensory reinforcement in developing interactions. In M. Fawcus
(ed.), Children with learning difficulties: a collaborative approach to their education and management.
London: Whurr.
8
People with profound and multiple learning disabilities: A review of research about their lives
Theme 3: Communication
The wealth of academic literature on communication and people with PMLD is
considerable and understandably dominated by academics from a speech and
language therapy background. These researchers have made important contributions
to mapping out the need for individualised approaches and emphasise the
complexities involved in supporting this central area of people’s lives.
There has been a significant shift in the approach taken towards understanding the
nature of communication that takes place between people with PMLD and their
significant others31. This can be summarised as:
(1) a shift in assessment procedures - from those designed to identify people
appropriate for augmentative communication to those based on an inclusive
principle that improved communication is possible for everybody
(2) a shift in the goal of intervention - from the development of specific, isolated
speech and language skills to the development of integrated, functionally relevant
communication
(3) an increased understanding of the multimodal nature of communication
Functional communication appears to have emerged as the model of choice as a result
of disillusionment with the mechanical teaching of speech and signs32. It has three
important aspects: it occurs in everyday life, it results in real consequences and it
includes (but is not limited to) spontaneous communication33.
Research exploring communication and people with PMLD is therefore characterised
by both a shift from 1:1 teaching towards an understanding of the role of
communication in context and an emphasis on the developmental perspective 34.
Studies focus on a number of themes: the assessment of pre-intentional and pre-verbal
behaviour to indicate starting points for encouraging communication development35;
the importance of ‘natural’ contexts to attempts at communication by people with
31
Mirenda, P., Iacono, T. & Williams, R., (1990). Communication options for persons with severe and
profound disabilities: state of the art and future directions. Journal of the Association for Persons with
Severe Handicaps, 15, 1, 3-21.
32
Bradley, H. (1998). Assessing and developing successful communication. In P. Lacey & C. Ouvray
(eds.) People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton.
33
Roland, C. & Schweigert, P., (1993). Analysing the communication environment to increase
functional communication. Journal of Associations for Persons with Severe Handicaps, 18, 3, 161-176.
34
Goldbart, J., (1994). Pre-intentional communication: opening the communication curriculum to
students with profound and multiple learning difficulties. In J. Ware (ed.) Educating children with
profound and multiple learning difficulties. London: David Fulton Publishers.
35
For example, see: Nind, M. & Hewett, D. (1994) Access to communication: developing the basics of
communication in people with severe learning difficulties through Intensive Interaction. London:
David Fulton; Coupe O’Kane, J. & Goldbart, J. (1998) Communication before speech. London: David
Fulton
9
People with profound and multiple learning disabilities: A review of research about their lives
PMLD36 and the construction of communication ‘between’ people with PMLD and
their communication ‘partners’37.
There are many issues involved in interpreting the communication behaviours of
people with PMLD. Both inference and intention can play an important role in the
communication process and this raises a number of difficulties and risks where one of
the communication partners is not in a position to correct misunderstandings38.
Research suggests that when asked to estimate their clients' comprehension of
sentences at different levels of difficulty there can be a tendency to consistently
overestimate the clients' ability at the highest level of difficulty, while both under and
overestimation are likely to occur at the lower levels39.
Despite the successes reported by studies examining the use of augmentative and
alternative communication strategies40 (e.g. there is evidence to suggest that children
with multiple disabilities can learn to successfully operate a special microswitch
through vocalisation responses so as to obtain environmental stimulation41), widening
the person’s learning to other environments can fail due to poor co-ordination of
services and insufficient consistency of approach42. Clinically, a wide range of
assessment tools has been published43, including scales for people with both visual
and hearing impairments44.
36
Golden, J. & Reese, M., (1996). Focus on communication: improving interaction between staff and
residents who have severe or profound mental retardation. Research in Developmental Disabilities, 17,
363-382.
37
See for example: Bradshaw, J., (2001). Communication partnerships with people with profound and
multiple learning disabilities. Tizard Learning Disability Review, 6,2, 6-15; Bartlett, C. & Bunning, K.
(1997) The importance of communication partnerships: A study to investigate the communicative
exchanges between staff and adults with learning disabilities. British Journal of Learning Disabilities
25, 148-152.
38
Porter J.; Ouvry C.; Morgan M. & Downs C., (2001). British Journal of Learning Disabilities, 29, 1,
12-16.
39
Banat D.; Summers S. & Pring T., (2002). British Journal of Learning Disabilities, 30, 2, 78-81.
Schepis, M.M., Reid, D.H. & Beehrman, M.M., (1996). Acquisition and functional use of voice
output communication by persons with profound multiple disabilities. Behaviour Modification, 20,
451-468; Reichle, J., Feeley, K. & Johnston, S., (1993). Communication intervention for persons with
severe and profound disabilities. Clinics in Communication Disorders, 3, 7-30.
40
41
Lancioni G.E.; O'Reilly M.F.; Oliva D.; Coppa M.M., (2001). A microswitch for vocalization
responses to foster environmental control in children with multiple disabilities. Journal of Intellectual
Disability Research,45, 3, 271-275.
42
Bradley, H. (1998). Assessing and developing successful communication. In P. Lacey & C. Ouvray
(eds.) People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton.
43
For example: Coupe, J. & Goldbart, J. (1988). Communication before speech. London: Croom Helm;
Kiernan, C. & Reid, B., (1987). The pre-verbal communication schedule. Windsor: NFER Nelson;
Jones, L., (1989) The Kidderminster curriculum for children and adults with profound, multiple
learning difficulties. Birmingham School of Psychology, University of Birmingham.
44
Stillman, R. & Battle, C., (1985). Callier Azuza Scale (H). Scales for the assessment of
communicative abilities. Programme in communication disorders. Dallas, Texas: University of Texas
at Dallas, Callier Centre for Communication Disorders.
10
People with profound and multiple learning disabilities: A review of research about their lives
Theme 4: Meeting personal needs - Therapeutic interventions, promoting
independence and skill teaching
The literature cited under this theme reflects the focus on individualised approaches
and in terms of methodology, tends to be more clinical in nature. Much of the work
referenced is by recognised practitioners who report on clinical effectiveness rather
than results of large trials or empirically conducted studies. While this may make the
reliability of some of the conclusions open to question, it is important to remember
the idiosyncratic nature of PMLD and its unique impact on the individual and their
supporters, making more empirical, large sample studies extremely difficult to
execute.
The range of issues have been organised under the broad sub-headings of promoting
independence, ‘therapeutic’ approaches and provision of physical care and support.
Promoting independence
Involving people with PMLD in personally relevant activities of daily living may
range from assisting the individual to gain complete independence with the provision
of equipment and/or training, or it may enable control of an aspect of the activity. The
principle here is to give the person as much control as possible over their personal
activities, while also establishing the importance that they place on those specific
activities to ensure motivation to participate45. Completing an assessment of
motivation or volition is likely to be useful46.
Eating and drinking is a key area of daily living that can present people with PMLD
with a range of complex problems. Specific difficulties include primitive reflexes
(such as bite or gag reflex); tongue thrust; swallowing difficulties; affected facial
muscles; poor lip/tongue control; excessive drooling; sensory impairment; reinforced
and learnt behaviours and roles; communication difficulties; limited physical abilities.
Recognised techniques are available for practitioners to help address these issues47. In
addition, a thorough assessment from an occupational therapist is likely to lead to
recommendations regarding the use of appropriate equipment. A person-led approach
intent on involving the individual by considering motivation, communication and
other aspects of their perspective and experience is essential48.
As well as the teaching of independent living skills, some writers emphasise a shift
towards ways of increasing community access and social inclusion. Examples include
supporting people to learn about real-life community settings and how this can be
45
Miller, J., (1998). Personal needs and independence. In P. Lacey & C. Ouvray (eds.) People with
profound and multiple learning disabilities: a multidisciplinary approach to meeting complex needs.
London: David Fulton
46
Keilhofner, G., (1995). A model of human occupation: theory and application, 2nd edition. Baltimore:
Williams & Wilkins.
47
Miller, J., (1998). Personal needs and independence. In In P. Lacey & C. Ouvray (eds.) People with
profound and multiple learning disabilities: a multidisciplinary approach to meeting complex needs.
London: David Fulton
48
McCurtin, A., (1997). The manual of paediatric feed practice. Bicester: Winslow Press.
11
People with profound and multiple learning disabilities: A review of research about their lives
generalised49, or ways in which leisure time can be made more stimulating50. A
general focus on leisure time and leisure provision for people with PMLD continues
to develop51. This shift in emphasis may be related to the rhetoric enshrined in
national guidance on learning disability provision more widely, which promotes the
concepts of social inclusion and integration52.
Evidence base for the use of specific ‘therapeutic’ approaches
One may be forgiven for assuming that all approaches to support for people with
PMLD are perceived as ‘therapy’, as the literature generally appears to adopt the
stance that all time spent being with people needs to have a therapeutic component.
One hypothesis that might contribute to understanding this phenomenon is that
clinicians are attempting to address the evidence that people with PMLD are more
likely to be isolated within service environments. Alternatively, perhaps people with
PMLD are perceived to function in ways that are so very different from more able
people with learning disabilities that their support can only be addressed within an
ameliorating context.
A number of what can be described as ‘alternative’ therapies have been employed
with people who have PMLD. Multisensory environments are often seen as an
appropriate ‘intervention’ for children and adults with PMLD, even though there is a
lack of evidence for their effectiveness. A wide range of outcomes has been identified
with little reference to the existing research base and there is a sense that sensory
stimulation is seen in itself as a ‘good thing’. The supporter’s desire to build positive
relationships and provide pleasant experiences is most likely to be the important
factor in the use of these environments53.
Research exploring the effects of Snoezelen, active therapy, relaxation and
aromatherapy/hand massage suggests that both Snoezelen and relaxation can increase
the level of positive communication and can have some impact on decreasing negative
communication. However, this research also indicates that active therapy and
aromatherapy/hand massage is likely to have little or no effect on communication
overall. Considering the lack of generalisation of therapeutic effects, these results
need further investigation54. While people with PMLD are reported to have strong
responses towards stimuli provided by members of staff (e.g. through touching or
49
Berg ,W.K., Wacker, D.P., Ebbers, B. Wiggins, B., Fowler, M. & Wilkes, P., (1995). A
demonstration of generalization of performance across settings, materials and motor responses for
students with profound mental retardation. Behaviour Modification, 19, 119-143.
50
Facon, B. & Darge, T.M., (1996). Evaluation of toy variation on engagement in a leisure activity of
two children with profound multiple handicaps. Psychological Reports, 79, 203-210.
51
Hogg, J. Cavet, J. (eds.) (1995). Making leisure provision for people with profound learning and
multiple disabilities. London: Chapman & Hall.
52
Department of Health, (2001). Valuing people. HMSO
53
Stephenson, J, (2002). Characterization of multisensory environments: Why do teachers use them?
Journal of Applied Research in Intellectual Disabilities, 15, 1, 73-90.
54
Lindsay W.R.; Black E.; Broxholme S.; Pitcaithly D. & Hornsby N., (2001). Effects of four therapy
procedures on communication in people with profound intellectual disabilities Journal of Applied
Research in Intellectual Disabilities, 14, 2, 110-119.
12
People with profound and multiple learning disabilities: A review of research about their lives
talking to the person), it is suggested the living environment is as good a place as the
multisensory environment for promoting alertness and interactions55.
Most pre-verbal and non-verbal adults appear able to express emotions such as pain
and anger with sounds such as crying, screaming or shouting. These sounds, however,
are not always received as communication by supporters and can sometimes lead to
further isolation. In addition, some clients make sounds, which seem intended to be
self-reassuring or comforting and have become habitual and used as a barrier against
others. In this context, music therapy has been used to establish an interactive
relationship by drawing parallels with the spontaneous and instinctive strategies used
in early parent–infant communication56.
A body of evidence suggesting the clinical effectiveness of Intensive Interaction
(which some might refer to as an ‘approach’ rather than an ‘intervention’) continues
to emerge57. Robust evaluation of this style of being with people presents many
practical challenges58 and more research is needed (e.g. comparing Intensive
Interaction with other approaches, or conducting Intensive Interaction in a range of
settings and with different practitioners).
Provision of physical care and support
The physical care of people with PMLD can be seen as either very simple or very
complex – supporting basic life needs can be done with little intervention, but
enabling a more fulfilled and meaningful life can be a more complicated challenge59.
Practitioners usually understand the implications of limited movement for the body60,
and a wide range of assessment tools has been developed for this purpose61. A
55
Vlaskamp C., de Geeter K.I., Huijsmans L.M. & Smit I.H. (2003). disabilities Journal of Applied
Research in Intellectual Disabilities, 16, 2, 135-143.
56
Graham, J., (2004). Communicating with the uncommunicative: music therapy with pre-verbal
adults. British Journal of Learning Disabilities, 32,1, 24-29.
57
See for example: Jones, R.S.P. & Williams, H., (1998). Reducing stereotyped behaviour: an
experimental analysis of Intensive Interaction. Journal of Practical Approaches to Disability, 22, 2125; Kellett, M. C., (2000), Sam’s story: the effect of Intensive Interaction in the social and
communicative ability of a young child with severe learning difficulties. Support for Learning, 15, 165172; Lovell, D.M., Jones, S.P. & Ehpraim, G., (1998). The effect of Intensive Interaction on the
sociability of a man with severe intellectual disabilities. International Journal of Practical Approaches
to Disability, 22, 3-9; Elgie, S. & Maguire, N., (2001). Intensive Interaction with a woman with
multiple and profound disabilities: a case study. Tizard Learning Disability Review, 6, 3, 18-24.
58
Samuel, J., (2001). Intensive Interaction in context. Tizard Learning Disability Review, 6, 3, 25-30.
59
Goldsmith, J. & Goldsmith, L., (1998). Physical management. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton
Goldsmith, J. & Goldsmith, L., (1996). Symmetrical body support: a carers’ guide to the
management of posture. Ledbury: The Helping Hand Company; Goldsmith, J. & Goldsmith, L.,
(1996). Symmetrical body support: a therapists’ guide to the management of posture. Ledbury: The
Helping Hand Company.
60
61
Poutney, T.E., Mulcahy, C. & Green, E., (1990). Early development of postural control.
Physiotherapy, 76, 12, 799-802.
13
People with profound and multiple learning disabilities: A review of research about their lives
common theme is apparent in many of the approaches based on physiotherapeutic
principles, namely that quality in the performance of movement is an important aim,
with more ‘normal’ movement and posture being the eventual goal. This ‘functional’
approach sets short-term goals as part of an ongoing programme62. However,
comparative studies of different approaches are fraught with methodological problems
and therefore have limited utility, so that practice is not yet evidence based 63. While
there may be benefits observed in the young child (e.g. with cerebral palsy) the
effective parts of treatment long term are likely to be those which become part of the
individual’s daily life64.
The carer’s or parent’s role in the individual’s physical management is clearly crucial
and the dependency of the individual with PMLD can lead to a sense of needing to
protect against ‘outside’ intervention. Great sensitivity is needed to enable a
collaborative relationship between carers and services to gradually evolve65.
As with anybody, proper rest and quality sleep are essential to good health, but there
might be specific barriers preventing this for people with PMLD, such as having
difficulty in changing position66. Polysomnographic evidence suggests increased
obstructive apnoea (where breathing is interrupted), as well as epileptiform discharges
in the sleep of people with severe cerebral palsy67. Circadian rhythms may be
disturbed, so the usual pattern of waking during the day and sleeping at night does not
occur68. Here behavioural interventions have been unsuccessful, although there is
some evidence that prescribing melatonin can be beneficial69. Considering postural
support can also ameliorate the situation70. The importance of positioning at night is
Partridge, C. J., (1996). Physiotherapy approaches to the treatment of neurological conditions – an
historical perspective. In S. Edwards, Neurological physiotherapy: a problem solving approach.
Edinburgh: Churchill Livingstone.
62
Partridge, C. J., (1996). Physiotherapy approaches to the treatment of neurological conditions – an
historical perspective. In S. Edwards, Neurological physiotherapy: a problem solving approach.
Edinburgh: Churchill Livingstone
63
64
Scrutton, D., (1984). Management of the motor disorders of children with cerebral palsy. London:
Spastics International Medical Publishers.
65
Hornby, G., (1994). Counselling in child disability: skills for working with parents. London:
Chapman & Hall.
66
Goldsmith, J. & Goldsmith, L., (1998). Physical management. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton.
67
Kotagel, S., Gibbons, V.P. & Stith, J.A., (1994). Sleep abnormalities in patients with severe cerebral
palsy. Developmental Medicine and Child Neurology, 36, 304-311.
68
Okawa, M., Takahashi, K. & Sasaki, H., (1986). Disturbance in circadian rhythms in severely brain
damaged patients correlated with CT findings. Journal of Neurology, 233, 274-282.
69
Jan, J.E., Espezel, H. & Appleton, R.E., (1994). The treatment of sleep disorders with melatonin.
Developmental Medicine and Child Neurology, 36, 97-107.
70
Turrill, S., (1992). Supported positioning in intensive care, Paediatric Nursing, May, 24-27.
14
People with profound and multiple learning disabilities: A review of research about their lives
recognised by therapists, as more damage is likely to be caused by uncontrolled lying
than uncontrolled sitting71.
The sensitive area of intimate and personal care provision by statutory services has
also been addressed, but from the perspective of the worker more than that of the
service users or family carer. This work explores staff attitudes, good practice and
safeguards relating to prevention of abuse72.
Theme 5: Sensory needs
Given that the vast majority of people with PMLD will experience both limited
communication skills and impairments in vision and hearing, considerations of
sensory needs are essential. The role of sensory function cannot be overestimated in
that information required through the senses is the basis for learning about and
acquiring a conceptual understanding of the physical world73.
Seven major types of sensory input have been identified – visual, tactile, vestibular,
proprioceptive, auditory, olfactory and gustatory74. A distinction can also be made
between external input received from the environment (e.g. light) and internal
sensory information from within the body system (e.g. proprioceptive information
about the body’s position in space)75. Attention needs to be paid to the extent of
sensory impairment, how this affects the nature and quality of information the
individual receives about their surroundings – and most importantly, how this
information will affect feelings of security and safety.
Where sensory impairment has been identified, interventions can assist with
maximising the amount and quality of information available to the person. For
example, much has been learned about how to create visual distinction and clarity by
using colour contrast, borders and edging, by thinking about lighting positioning,
troublesome reflection and glare76. Less consideration has been paid to create
acoustically meaningful surroundings (e.g. thinking about how an individual with
71
Pope, P., (1997). Management of the physical condition in people with chronic and severe
neurological disabilities living in the community. Physiotherapy, March, 83, 3.
72
Carnaby, S. & Cambridge, C., (2002), Getting Personal: A case study of intimate and personal care
practice in services for people with profound and multiple learning disabilities, Journal of Intellectual
Disability Research, 46, 2, 120-132.; Cambridge, P. & Carnaby, S., (2000), A personal touch?:
Managing the risks of abuse during intimate and personal care for people with learning disabilities,
Journal of Adult Protection, 2(4), pp4-16.
73
Warren, D., (1994). Blindness and children: an individual differences approach. Cambridge:
Cambridge University Press.
74
Rosen, S., (1997). Kinesiology and sensorimotor function. In Blasch, Wiener & Welsh (eds.).
Foundations of orientation and mobility. New York: American Foundation for the Blind.
75
Brown, N., McLinden, M. & Porter, J., (1998). Sensory needs. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton.
76
Best, A., (1992). Teaching children with visual impairments. Milton Keynes: Open University Press.
15
People with profound and multiple learning disabilities: A review of research about their lives
sensory loss makes sense of chatter, chair legs scraping on the floor and other
incidental sound sources)77.
Other key issues that are often neglected include managing situations where
individuals with sensory loss are sharing the environment with people who do not
have those impairments. Some adaptations are likely to be of benefit to all. Equally,
the use of touch can act as interpretation and reassurance in a world that is
experienced as overwhelming and chaotic78. Specialists (e.g. optometrists and
audiologists) can be used to contribute to a collaborative and multidisciplinary
approach79.
Assessment of sensory abilities remains challenging, due to both the uncertainty of
the measures used and the difficulty of interpreting the results80. Teachers of children
with visual and hearing impairments are left feeling uncertain about their pupils’
skills81. A central problem is that many measures were developed for assessing
children following a typical path of development and therefore clinicians need to use
them creatively if they are to have any meaning for people with PMLD. Functional
assessments that draw from observation of the individual in everyday settings are
more likely to reveal information about personal reinforcers and reactions– such as
preferred people or other stimuli82.
Monitoring responses in the five categories of awareness, attending, localising,
recognising and understanding is recommended when assessing vision 83 but can also
underpin assessment of functioning in other sensory modalities84. Crucially, it is
suggested that sensory reinforcement can be used to enhance awareness and support
77
Rikhye, C., Gothelf, C. & Appell, M., (1989). A classroom environmental checklist for students with
dual sensory impairments. Teaching Exceptional Children, 22, 1, 44-46.
78
Brown, N., McLinden, M. & Porter, J., (1998). Sensory needs. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton
79
Sobsey, D. & Wolf-Schein, E., (1991). Sensory impairments. In F. Orelove and D. Sobsey Educating
children with multiple disabilities: a transdisciplinary approach. Baltomire: Paul H. Brookes.
80
McCraken, W., (1994). Deaf children with complex needs: a piece in the puzzle. Journal of British
Association of Teachers of the Deaf, 18, 2, 54-60.
81
Porter, J., Miller, O. & Pease, L., (1997). Curriculum access for deafblind children. Research Report
No. 1. DfEE.
82
Buultjens, M., (1997). Functional vision assessment and development in children and young people
with multiple disabilities and visual impairment. In Mason, H. & McCall, S., (eds.) Visual impairment:
access to education for children and young people. London: David Fulton Publishers.
83
Aitken, S. & Buultjens, M., (1992). Vision for doing: assessing functional vision of learners who are
multiply disabled. Edinburgh: Moray House Publications.
84
Brown, N., McLinden, M. & Porter, J., (1998). Sensory needs. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton
16
People with profound and multiple learning disabilities: A review of research about their lives
the individual in developing a sense of self – particularly those with visual
impairment and/or hearing loss85.
Theme 6: Staff training and staffing issues
As for all people with learning disabilities, issues relating to the training of staff
working with people with PMLD remain central to the debate concerning the nature
of ‘high quality’ support. National frameworks such as NVQ and LDAF aim to
establish consistent foundations for staff teams, upon which more specialist and
individualised knowledge can be built86.
However, while highly recommended the implementation of such schemes are not
required by legislation87 and where guidance exists it tends to be for new recruits
rather than existing personnel. There is still, perhaps, a tendency to approach staff
recruitment in terms of ordinary living principles as a way of avoiding stigmatisation
and institutionalisation, emphasising the value of providing staff from ‘ordinary’
backgrounds who are employed to do an ‘ordinary’ job. While this approach has its
merits, it also has accompanying risks, particularly for people with PMLD who by
definition are likely to need specialist support with eating, drinking, sleeping and
moving around. The literature does not define or review the employee qualities
needed for working in such a context.
Aside from the issues relating to engagement and activity outlined on page 6, the
research literature relating specifically to staffing and people with PMLD appears
sparse and fairly disparate. The issues explored reveal that:

It has been suggested that community settings are more likely to provide support
of adequate quality to people with PMLD if close attention is paid to both the
techniques and strategies employed by service providers and to the appropriate
management and training of front-line staff88.

Some professionals report difficulties relating to differences in inter-professional
role expectations, apparently because of the unique fluid and temporal nature of
multidisciplinary teams in service settings89.
85
Bunning, K., (1997). The role of sensory reinforcement in developing interactions. In M. Fawcus
(ed.) Children with learning difficulties: a collaborative approach to their education and management.
London: Whurr.
86
For example, see Carnaby, S., (2002), Learning Disability Awards Framework Certificate in
Working with people with learning disabilities – Level 2, Brighton: Pavilion Publishing; Carnaby, S.,
(2003), Learning Disability Awards Framework Certificate in Working with people with learning
disabilities – Level 3, Brighton: Pavilion Publishing.
87
However, see recommendations of Valuing People (Department of Health, 2001) with regard to
LDAF
88
Hogg, J., (1998). Competence and quality in the lives of people with profound and multiple learning
disabilities Some Recent Research Tizard Learning Disability Review 3(1) 6-14
89
Dobson S.; Dodsworth S. & Miller M., (2000). Problem solving in small multidisciplinary teams: a
means of improving the quality of the communication environment for people with profound learning
disability. British Journal of Leanring Disabilities, 28,1, 25-30.
17
People with profound and multiple learning disabilities: A review of research about their lives

The two most important predictors of actual staff turnover are staff satisfaction
with public respect for the job and levels of practical support from supervisors90.

Staff are also unlikely to be trained in issues relating to the delivery of intimate
and personal care.91
Overall this suggests that there is great need to explore the nature of staff training,
retention and wider characteristics in order to address many of the issues raised in this
review. Importantly, staffing issues need to be explored if the observation that people
with PMLD and their families receive a ‘Cinderella’ service is ever to be rectified92.
Theme 7: Parent and carer issues
General observations
The pressures involved in caring for a child or adult with PMLD within the family are
well documented in the literature. Surveys of family carers suggest that the majority
of both children and adults with PMLD are entirely dependent upon someone else to
carry out the main basic care tasks (i.e. washing, dressing and support with eating)93.
The consequent time demands of the caring role are named as a significant factor 94,
which needs to be borne in mind when suggesting ways of helping and supporting
parents95. One study suggested that 72% of mothers interviewed were full-time carers,
with 5% in full-time and 16% in part-time employment96.
Wishes of parents and carers: Education and school provision
Parents of children and young people with PMLD often want – but are reported to not
always experience – a high level of involvement in their child’s education. A
significant proportion of these parents and carers want additional services, with a
90
Hatton, C. & Emerson, E., (1997). Brief report: Organisational predictors of actual staff turnover in a
service for people with multiple disabilities. Journal of Applied Research in Intellectual Disabilities,
11,2, 166-171.
91
Carnaby, S. & Cambridge, P., (2002). Getting personal: an exploratory study of intimate and
personal care provision for people with profound and multiple intellectual disabilities. Journal of
Intellectual Disability Research. 46, 2, 120-132.
O’Dwyer, J.M., (2000). Learning disability psychiatry - the future of services. Psychiatric Bulletin,
24: 247-250
92
93
Lambe, L. & Hogg, J., (1995). Children who have profound and multiple learning disabilities in
Tayside Region. Dundee: White Top Research Unit ,University of Dundee; Hogg, J. & Lambe, L.,
(1988). Sons and daughters with profound mental retardation and multiple handicaps attending
schools and social education centres: final report. London: Mencap.
94
Todd, T. & Shearn, J., (1995). Struggles with time: the careers of parents with adult sons and
daughters with learning disabilities. Cardiff: Welsh Centre for Learning Disabilities.
95
Lambe, L., (1998). Supporting families. In P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton.
96
Hogg, J. & Lambe, L., (1988). Sons and daughters with profound mental retardation and multiple
handicaps attending schools and social education centres: final report. London: Mencap.
18
People with profound and multiple learning disabilities: A review of research about their lives
priority for input being to support the development of communication skills97. Some
research suggests that parents are very satisfied98 or generally satisfied99 with what
was provided in terms of specialist education provision, with the majority of parents
preferring this to the option of their children being placed in integrated or mainstream
settings. However, it is also observed that for some parents it is not a question of them
choosing specialist provision as the ‘better’ option, but more that they perceive there
to be no alternative, seeing inclusive education as a ‘pipe dream’100.
Both parents of adults and parents of children with PMLD are reported to place
language and communication and fine motor skills as priority areas, while parents of
children also prioritised independent eating and toilet training101.
Parents’ and carers’ experiences of statutory services
The issue of disclosure remains one of the most important experiences in the lives of
families where a child has a disability102. Research indicates that there is still much to
be done in terms of providing parents with appropriate support and conducting the
disclosure process in an appropriately sensitive manner103. Early intervention is likely
to be of the most benefit, with research suggesting that consistency among
professionals – and/or input from the same individual(s) where possible – is seen to be
the optimal approach104. Disturbingly, there are reports that services largely ignore the
experience and perspective of the profoundly impaired child, their parent(s) and
family105.
Mothers of children whose profound disabilities are life threatening are reported to be
engaged in stressful but skilled care of their children with a clear wish to continue
Male, D., (1998). Parents’ views about special provision for their child with severe or profound and
multiple learning difficulties. Journal of Applied Research in Intellectual Disabilities, 11,2, 129-145.
97
98
Robertson, J. ,Emerson, E., Fowler, S., Letchford, S., Mason, H., Mason, L. & Jones, M. (1996).
Residential special school for children with severely challenging behaviours: the views of parents.
British Journal of Special Education, 23, 2, 80-87.
99
Knill, B. & Humphreys, K., (1996). Parental preference and its impact upon a market force approach
to special education. British Journal of Special Education, 23, 1, 30-34.
Male, D., (1998). Parents’ views about special provision for their child with severe or profound and
multiple learning difficulties. Journal of Applied Research in Intellectual Disabilities, 11,2, 129-145.
100
101
Hogg, J., Lambe, L., Cowie, J. & Coxon, J. (1987). People with profound retardation and multiple
handicaps attending schools or special education centres. London: Mencap PRMH Project, Report No.
4.
102
Lambe, L., (1998). Supporting families. In P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton.
103
MENCAP, (1997). Left in the dark: a report on the challenges facing the UK families of children
with learning disabilities. London: Mencap.
White, S., (1994). When the bough breaks: an independent survey into families’ perceptions of the
100 Hours model of service. West Yorkshire: 100 Hours.
104
105
Brett, J., (2002). The Experience of Disability from the Perspective of Parents of Children with
Profound Impairment: is it time for an alternative model of disability? Disability & Society, 17, 7, 825843.
19
People with profound and multiple learning disabilities: A review of research about their lives
caring for their child in the family home. The women interviewed frequently referred
to the process of gaining useful information on services as haphazard and most of the
services offered to them as uncoordinated, unreliable and difficult to access. As a
consequence, neither the learning disability services nor the acute medical services are
adequately meeting many of these children’s needs. Some families are forced to
privately finance services such as physiotherapy and speech therapy. The mothers
interviewed want services offered to them in their own home, particularly short homebased respite, which would offer them short breaks to rest or engage in part-time
employment. The study concludes that a reliable and flexible service response,
including a comprehensive information and advocacy support is indicated for these
families106.
Overall, there is evidence of variability in terms of parents’ desires for services and
their ability to access them107.
Impact on the family
There is evidence to suggest that the practical demands of caring for and obtaining
appropriate respite services can lead to considerable intra-marital difficulties, and
sometimes the break up of marital relationships108.
Mothers and fathers of a child with PMLD showed different engagement patterns with
the paid workforce from comparison parents. Hours of work for fathers of a young
adult with PMLD showed a bi-modal distribution, with some fathers working fewer
hours than usual and others working very long hours. For mothers in both groups, the
number of hours in paid employment was negatively associated with reports of
psychological problems. Increased attention needs to be given to the employment
opportunities of parents of children with disabilities since employment appears to play
a protective role for mothers in particular. Services provided to adults with disabilities
will need to change if parents are to have the same life chances as parents without
adult offspring with a disability.109
While organisations may recognise that siblings of people with PMLD may require
support, research suggests that there are no special difficulties in the psychological
adjustment of adolescent siblings of children with PMLD110. However, other evidence
has been cited through work carried out by the voluntary sector, of siblings being
106
Redmond, B. & Richardson, V., (2003). Just getting on with it: exploring the service needs of
mothers who care for young children with severe/profound and life-threatening intellectual disability.
Journal of Applied Research in Intellectual Disability, 16, 3, 205-218.
107
Hogg, J., Lambe, L., Cowie, J. & Coxon, J. (1987). People with profound retardation and multiple
handicaps attending schools or special education centres. London: Mencap PRMH Project, Report No.
4.
108
Withers P.& Bennett L., (2003). Myths and marital discord in a family with a child with profound
physical and intellectual disabilities. British Journal of Learning Disabilities, 31, 2, 91-95.
109
Einam M. & Cuskelly M., (2002). Paid employment of mothers and fathers of an adult child with
multiple disabilities. Journal of Intellectual Disability Research. 46, 2, 158-167.
110
Auletta, R. & DeRosa, A., (1991). Self-concepts of adolescent siblings of children with mental
retardation, Perceptual Motor Skills, 73, 211-214.
20
People with profound and multiple learning disabilities: A review of research about their lives
concerned about issues such as: limited time being available from parents, restrictions
being placed on family activities, worries about bringing friends home, guilt (about
being angry with their disabled sibling), embarrassment in public and fear about the
future111.
Theme 8: Mental health and well-being
A belated recognition that people with limited receptive and expressive
communication skills are equally capable of experiencing stress has led to important
research in the area of mental health and profound disability112, although this field of
study is still in its relative infancy113.
Research has begun looking at the assessment and diagnosis of depression in people
with PMLD, although much more work is needed in this area 114. However, it is clear
that the role played by families and carers in the assessment and diagnostic process is
invaluable115. Research looking at affective disorders in adults with learning
disabilities suggests that depression may not present a ‘classic picture’ in individuals
with severe and profound learning disabilities, but may include challenging
behaviours, which are referred to as ‘atypical symptoms’, such as self-injury,
aggression and irritability116. However, the prevalence of mental illness is at least as
high as in the general population117.
111
Lambe, L., (1998). Supporting families. In P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton, citing the work of Contact A Family (CAF).
112
For examples see the following: King, B.H., DeAntonio, C., James, B.A., McCracken, J.T., Forness,
S.R. & Ackerland, V., (1994). Psychiatric consultation in severe and profound mental retardation.
American Journal of Psychiatry, 151, 12, 1802-1808; Chaney, R.H., (1996). Psychological stress in
people with profound mental retardation. Journal of Intellectual Disability Research, 40, 4, 305-310;
Cherry, K.E., Matons, J.L. & Paclawskyj, T.R., (1997). Psychopathology in older adults with severe
and profound mental retardation. American Journal on Mental Retardation, 101, 5, 445-458; Matson,
J.L., Smiroldo, B.B., Hamilton, M. & Baglio, C.S., (1997). Do anxiety disorders exist in persons with
severe and profound mental retardation? Research in Developmental Disabilities, 18, 1, 39-44.
113
Hogg, J., (1998). Competence and quality in the lives of people with profound and multiple learning
disabilities Some Recent Research Tizard Learning Disability Review 3(1) 6-14.
114
Tsiouris J.A. (2001). Diagnosis of depression in people with severe/profound intellectual disability.
Journal of Intellectual Disability Research, 45, 2, 115-120
115
Baker, R., (1993). Medical needs in a service for people with learning difficulties. In P. Brigden &
M. Todd (eds.) Concepts in community care for people wti ha learning difficulty. Hampshire:
Macmillan Press.
116
Ross E. & Oliver C., (2002). The relationship between levels of mood, interest and pleasure and
‘challenging behaviour’ in adults with severe and profound intellectual disability. Journal of
Intellectual Disability Research, 46, 3, 191-197
117
Turner, S. & Moss, S., (1996). The health needs of adults with learning disabilities and the Health of
the Nation Strategy. Journal of Intellectual Disability Research, 40, 5, 438-450.
21
People with profound and multiple learning disabilities: A review of research about their lives
Theme 9: Challenging behaviour
A high prevalence of challenging behaviours among people with PMLD is
reported118. Intervention has tended to be informed largely by behavioural analysis
and work on self-injurious behaviour in particular has focused on approaches such as
differential reinforcement119 or distraction and diversion120.
Whilst much progress has been made with regard to the closure of institutions and the
provision of community based supports, it has tended to be the case that those
individuals deemed to be ‘hard to place’ have been the last to leave121. People with
severe or profound learning disabilities and challenging behaviours are less likely to
be offered community services until the end of the deinstitutionalisation process and
are also more likely to be reinstitutionalised122. Services adhering rigidly to the
principle of normalisation with inflexible implementation of this approach are
particularly likely to struggle123.
Research suggests that after leaving institutional care to be supported in community
settings, people with severe or profound learning disabilities and challenging
behaviours were participating more frequently and in a wider range of activities.
There were no reported increases in levels of challenging behaviour, indicating that
support for people with ‘serious’ challenging behaviour can be provided in
community settings124.
It is noted here that the term ‘challenging behaviour’ tends to be used to describe acts
that are likely to jeopardise the individual’s placement in the community and can
include aggressions towards others, screaming or self-injurious behaviours.
Behaviours that are likely to indicate disengagement with the environment – which
could be early warnings of stress that in turn can lead to mental health problems - are
not usually included. Examples include stereotypy, withdrawal and other behaviours
that are presumed to indicate engagement with the person’s internal world, rather than
the external world. It might be argued that such behaviour is just as ‘challenging’,
albeit in a very different context.
118
Hogg, J., (1998). Competence and quality in the lives of people with profound and multiple learning
disabilities Some Recent Research Tizard Learning Disability Review 3(1) 6-14.
119
Lockwood, K. & Williams, D.E., (1994). Treatment and extended follow-up of chronic hand
mouthing. Journal of Behaviour Therapy and Experimental Psychiatry, 25, 161-169.
120
Turner, W.D., Realon, R.E., Irvin, D. & Robinson, E., (1996). The effects of implementing progam
consequences with a group of individuals who engaged in sensory maintained hand mouthing.
Research in Developmental Disabilities, 17, 311-330.
121
Wing, L., (1989). Hospital closure and the resettlement of residents. Aldershot: Avebury.
122
Intagliata, J. & Willer, B., (1982). Reinstitutionalization of mentally retarded persons successfully
placed in family-care and group homes. American Journal of Mental Deficiency, 87, 34-39.
123
Mansell, J. , Hughes, H. & McGill, P., (1993). Maintaining local residential placements. In E.
Emerson, P. McGill & J. Mansell, (eds.) Severe learning disabilities and challenging behaviours:
Designing high-quality services. London: Chapman & Hall.
124
Mansell, J., (1994). Specialized group homes for persons with severe or profound mental retardation
and serious problem behaviour in England. Research in Developmental Disabilities, 15, 5, 371-388.
22
People with profound and multiple learning disabilities: A review of research about their lives
Theme 10: Physical health
Evidence suggests that around a fifth of the population of people with PMLD have a
high level of health care need125. Research exploring the wide range of surgical and
orthotic interventions on the quality of life of children and adults with PMLD
suggests a need for the development of appropriate measures to meet the specific
requirements of this population126. The increasing analysis of quality of life issues for
people with disabilities has not been paralleled in relation to people with PMLD and
physical health is a glaring example of this neglect. One study suggested that 92% of
those examined had a previously undetected but treatable condition127.
There is evidence that people with PMLD are at a high risk of being underweight, in
some cases severely so128. Almost all are at risk of developing pressure sores. A
significant number of people with PMLD receive their food through a nasogastric
tube or have a gastrostomy; therefore an important social and pleasurable aspect of
daily life (i.e. eating) is denied them. Careful thought needs to be given to how people
are supported with taking sustenance and the impact that interventions have on their
physical health129.
Other key issues reported include the following:

The most common cause of death is respiratory disease with infections playing a
disproportionate role130.

Comparative research suggests that people with profound learning disabilities are
less at risk of developing cancer than those with mild, moderate or severe learning
disabilities131.
125
Ganesh, S., Potter, J. & Fraser, W., (1994). An audit of physical health needs of adults with
profound learning disability in a hospital population. British Journal of Learning Disabilities, 25, 2630
126
Neilson A.; Hogg J.; Malek M.; Rowley D., (2000). Impact of surgical and orthotic intervention on
the quality of life of people with profound intellectual and multiple disabilities and their carers. Journal
of Applied Research in Intellectual Disability, 13, 4, 216-238.
127
Meehan, S., Moore, G. & Barr, O., (1995). Specialist services for people with learning disabilities.
Nursing Times, 91, 13, 33-5.
128
Ganesh, S., Potter, J. & Fraser, W., (1994). An audit of physical health needs of adults with
profound learning disability in a hospital population. British Journal of Learning Disabilities, 25, 2630.
129
Hutchinson, C., (1998). Positive health: a collective responsibility. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton.
130
Turner, S. & Moss, S., (1996). The health needs of adults with learning disabilities and the Health of
the Nation Strategy. Journal of Intellectual Disability Research, 40, 5, 438-450.
131
Turner, S. & Moss, S., (1996). The health needs of adults with learning disabilities and the Health of
the Nation Strategy. Journal of Intellectual Disability Research, 40, 5, 438-450.
23
People with profound and multiple learning disabilities: A review of research about their lives

It is accepted that the likelihood of epileptic activity increases with the severity of
an individual’s learning disability132, and it is suggested that around 70% of
people with profound learning disabilities are likely to have epilepsy133.

Incontinence arises as a result of general developmental delay, and while
individuals with profound learning disabilities might find it difficult to learn the
required skills in this area, it is important that carers assist them in achieving
‘social continence’. This refers to ways of managing continence based on a
dignified, planned and systematic approach, that is well-informed, holistic and
person-centred134. The importance of consistent approaches that emphasise the
importance of staff reflection and awareness of the impact of personal attitudes on
practice has also been acknowledged135.
There is evidence to suggest that people with PMLD are being denied access to
regular screening services available to the general population136. The observation that
the health needs of people with profound learning disabilities are at serious risk of
being overlooked emphasises the role of carers in noting changes in behaviour which
might indicate pain or discomfort137. However, it is also acknowledged that there are
difficulties in recognizing pain and physical illness in this population138.
Debate continues as to who is best placed to monitor and meet the physical health
needs of people with PMLD. Learning disability nurses have received specialist
training and are well placed to bridge the gap between the individual and specialist
services139. However, philosophies promoting social inclusion and integration urge
those working in services to ensure the people they support are accessing generic
132
Clarke, M., (1990). Epilepsy: identification and management. In Hogg, J., Sebba, J. & Lambe, L.,
Profound mental retardation and multiple impairment: Volume 3 – Medical and physical care and
management. London: Chapman & Hall.
133
Ganesh, S., Potter, J. & Fraser, W., (1994). An audit of physical health needs of adults with
profound learning disability in a hospital population. British Journal of Learning Disabilities, 25, 2630.
134
Halliday, P., (1990). The management of continence. In Hogg, J., Sebba, J. & Lambe, L., Profound
mental retardation and multiple impairment: Volume 3 – Medical and physical care and management.
London: Chapman & Hall.
135
Carnaby, S. & Cambridge, C., (2002), Getting Personal: A case study of intimate and personal care practice in
services for people with profound and multiple learning disabilities, Journal of Intellectual Disability Research,
46, 2, 120-132.
136
Hutchinson, C., (1998). Positive health: a collective responsibility. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton.
137
Hutchinson, C., (1998). Positive health: a collective responsibility. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton.
138
Hinder S. & Perry D., (2000). Sodium-valproate-induced pancreatitis in a man with profound
intellectual disability: the significance of diagnostic difficulties. Journal of Applied Research in
Intellectual Disabilities, 13, 4, 292-297.
139
Cox, Y., (1993). Tailor-made for the job. Nursing Times, 89, 22, 66.
24
People with profound and multiple learning disabilities: A review of research about their lives
services140. The wisdom of this approach is questionable, due to the nature of support
required by people with such complex health needs. Multidisciplinary collaboration in
this area (i.e. health promotion) is likely to be the way forward 141. Many challenges
lie ahead, not least of how to involve people with PMLD in their own healthcare142.
Consent is clearly a central issue when considering any intervention with physical
well being and there is general consensus the ‘best interests’ guidelines need to be
followed143.
Theme 11: Personal relationships
The literature relating to this area for people with profound disabilities is small,
suggesting their personal and intimate relationships are thought about less often144. It
is felt practitioners are likely to form a major part of an individual’s network, with
many of those people coming and going with little time to build up meaningful
relationships 145. Making friends is also felt to be more difficult PMLD. Not only are
they are likely to have smaller networks, but the complex interpersonal skills required
to initiate and maintain friendships will make it more difficult to make the most of
any available opportunities for developing their relationships146. However a limited
number of examples of friendships occurring between children or adults with PMLD
and non-disabled others are available147.
There is evidence to suggest that there are few opportunities for reciprocity between
residents and staff in many community settings148 and the likelihood of this may
increase where residents have PMLD. It a common assumption people with PMLD do
140
Department of Health, (2001). Valuing People.
141
Beattie, A., (1994). Healthy alliances or dangerous liaisons? The challenge of working together in
health promotion. In A. Leathard (ed.) Going inter-professional: working together for health and
welfare. London: Routledge.
142
Hutchinson, C., (1998). Positive health: a collective responsibility. In P. Lacey & C. Ouvray (eds.)
People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton
Holman, A., (1997). ‘In the absence of legislation , follow the best interests guidelines’. Community
Living, 10, 3, 2.
143
144
Ouvry, C., (1998). Making relationships. In P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton
145
Lacey, P., (1996). The inner life of children with profound and multiple learning disabilities. In
V.Varma (ed.) The inner life of children with special needs. London: Whurr Publishers.
146
Ouvry, C., (1998). Making relationships. In P. Lacey & C. Ouvray (eds.) People with profound and
multiple learning disabilities: a multidisciplinary approach to meeting complex needs. London: David
Fulton
147
Perske, R. & Perske, M., (1988). Circles of friends: people with disabilities and their friends enrich
the lives of one another. Nashville: Abingdon Press.
148
Forrester-Jones, R., Carpenter, J., Cambridge, P., Tate, A., Hallam, A., Knapp, M. & Beecham, J.,
(2002). The quality of life of people 12 years after resettlement from long stay hospitals: users' views
on their living environment, daily activities and future aspirations. Disability & Society , 17, 7, 741 –
758.
25
People with profound and multiple learning disabilities: A review of research about their lives
not communicate with each other, but where social interaction are made possible,
people may make contact through vocalisation or touch149. Such relationships may not
involve understanding each other’s needs, but they may well develop a high level of
intimacy and reciprocity in terms of non-verbal behaviour150.
A range of literature151 suggests particular schemes such as ‘Circles of Support’ or
‘Circles of Friends’ are the mechanisms by which people with profound disabilities
are most likely to access opportunities for forming and developing relationships152.
Befriending schemes are also suggested as useful ways forward in this area153. Selfadvocacy may be a long way off for many given the nature of skills required, although
professionals clearly have a duty to provide people with the tools they need to make
themselves heard 154.
Sexuality and sexual behaviours can now be explored in positive ways through the
availability of training resources155 and a wider acceptance that sensitive issues such
as masturbation156 need careful and consistent approaches and that services have a
duty to tackle this important area of people’s lives.
149
Ware, J., (1994). Educating children with profound and multiple learning difficulties. London:
David Fulton Publishers.
150
Firth, H. & Rapley, M., (1990). From acquaintance to friendship: issues for people with learning
disabilities. Kidderminster: BIMH Publications.
151
Neville, M., (1996). Around in a Circle. Community Care, Feb/March, 4-5.
152
McConkey, R., (1998). Community integration and ordinary lifestyles. In P. Lacey & C. Ouvray
(eds.) People with profound and multiple learning disabilities: a multidisciplinary approach to meeting
complex needs. London: David Fulton
153
Bayley, M., (1997). What price friendship? Encouraging the relationships of people with learning
difficulties. Minehead, Somerset: Hexagon Publishing.
154
Tilstone, C. & Barry, C., (1998). Advocacy and empowerment: what does it mean for pupils and
people with PMLD? P. Lacey & C. Ouvray (eds.) People with profound and multiple learning
disabilities: a multidisciplinary approach to meeting complex needs. London: David Fulton.
155
Downs, C. and Craft, A. (1997) Sex in context: a personal and social development programme for
children and adults with profound a multiple impairments Hove: Pavilion Publications/ Joseph
Rowntree Foundation Part I: Strategies for devising a programme Part II: Strategies for staff
development and Part III: Safeguards in systems: a handbook
156
Cambridge, P., Carnaby, S. & McCarthy, M., (2003). Responding to masturbation in supporting
sexuality and challenging behaviour in services for people with learning disabilities. Journal of
Learning Disabilities, 7(3), 251-266
26
People with profound and multiple learning disabilities: A review of research about their lives
Suggestions for future research
This final section draws on the preceding review and suggests areas for future
research. These ideas are presented under the listed themes and either build on
existing studies or represent apparent gaps in the research literature. Views and
suggestions from academics in the field of learning disabilities, where available, have
been incorporated into this list of suggestions.
Theme 1: Service design and quality of life
This is a core area for future research and in many ways underpins suggestions under
other headings. Examples here include:

Clinical research looking at the terminology used in services. This would
establish the ways in which people with PMLD are described within statutory
services and how these descriptions enhance or impede the support provided. This
would build on the survey of partnership boards already completed157.

Are we able to more accurately estimate how many people there are in Britain
with PMLD? How many of these people are living at home and how many are
using particular types of service?

Comparison of service models. Research is needed to explore the experience of
living in residential settings specifically designed for people with PMLD and
compare this with experiences of mixed settings. A valuable outcome would be a
set of conclusions drawn about what makes ‘good’ residential support for this
population. Similarly, a review of the ‘new’ day activity models and how they are
affecting people with PMLD would be useful. This would directly tackle the
current debate about the role of building-base provision and establish best practice
service models in day occupation.
Theme 2: Choice and decision-making

A review of how the concept of choice is addressed in services. The term ‘choice’
still appears to be a muddy concept for many service providers. An analysis of
how people with PMLD are offered choices throughout their day would help to
outline both the ways in which decision-making needs to be approached and the
range of settings in which it can be considered.

A review of how decisions are made on behalf of people. This might range from
everyday decisions about what to eat, through to discussions about compatibility
of potential housemates.
Theme 3: Communication
A wide literature is available that establishes core principles of effective
communication and the range of technologies that can augment an individual’s skills.
157
Presented at the PMLD Network Seminar on 14th October 2004
27
People with profound and multiple learning disabilities: A review of research about their lives
This literature also increasingly emphasises the role of partnership when trying to
establish good communication with people with PMLD. There are opportunities for
exploring the ways in which this important work is filtering down into everyday
practice:

Communication audits. To what extent are people with PMLD and their families
receiving specialist support around communication? How well are staff and
families able to follow the advice given by clinicians (e.g. are programmes being
followed accurately and regularly?) How often are guidelines reviewed and
evaluated? How effective are training initiatives in communication skills?
Theme 4: Meeting personal needs - Therapeutic interventions, promoting
independence and skill teaching
This area continues to expand but much is left to do in terms of establishing reliable
evidence-based data about meeting people’s needs. Suggestions for future research
include:

Survey of interventions used with people with PMLD. Which approaches are
used most? How are they evaluated? Are staff and family carers trained in how to
use them? Are there clear objectives set for their implementation? How often is
their utility reviewed? Can we establish clear benefits of and practice guidelines
for particular approaches?158 What happens when personnel leave?

Review of person-centred planning and people with PMLD. There is recognition
that future research needs to explore the implementation of person-centred
planning (PCP)159, but there also needs to be work looking specifically at the
nature and outcomes of PCP for people with PMLD. This could review the ways
in which people are currently getting involved in their own planning systems, but
also how any outcomes set are reviewed and carried forward into the individual’s
everyday life. There is evidence to show that for some planning systems, the
outcomes set can be too vague and non-functional to be of any direct benefit160.
158
For example, is it possible to draft a set of practice guidelines for some if not all approaches, similar
in nature to the recent BPS guidelines on working with people with challenging behaviour? (Ball, T.,
Bush, A. & Emerson, E., (2004). Psychological interventions for severely challenging behaviours
shown by people with learning disabilities. Leicester: BPS.
159
See Emerson, E. & Stancliffe, R.J., (2004). Planning and action: comments on Mansell & BeadleBrown. Journal of Applied Research in Intellectual Disabilities. 17, 23-26.
160
Mansell, J. & Beadle-Brown, (in press). Person-centred Planning and Person-centred Action: A
Critical Perspective. In P. Cambridge & S. Carnaby (eds.). Person-centred planning, care management
and people with learning disabilities. London: Jessica Kinglsey.
28
People with profound and multiple learning disabilities: A review of research about their lives
Theme 5: Sensory needs
Suggestions in this area include:

How often are sensory assessments being conducted? Are there systems to
ensure that people receive regular assessment and review of their sensory
abilities?

Survey of primary care/generic professionals and their understanding people
with PMLD. This would include optometrists and audiologists. How do they work
with this population? What is the nature of local inter-agency relationships and
partnerships?

How do the results of sensory assessments impact upon service provision? In
what ways do clinicians, support staff and family carers adapt their approaches
and ways of working in order to meet the needs of people with PMLD and
specific sensory impairments?
Theme 6: Staff training and staffing issues
Staff training continues to be a core issue in learning disability provision. Specific
examples of projects that could be carried out with those working with people with
PMLD include:

Survey of staff knowledge and experience of PMLD. Have support staff had
specific training? What is their acquired knowledge and experience? To what
extent do the NVQ and LDAF training frameworks specifically address the
development of staff skills in working with people with PMLD?

Are staff able to identify areas where they feel they need more training? Do staff
feel adequately equipped to support a population of people whose needs are likely
to become more complex with each cohort?

Which models of training are more successful? When evaluated carefully, are
staff able to implement outcomes of training around an individual more easily
than the outcomes from general training in PMLD (or vice versa)? Who is best
placed to deliver training? Are training programmes with nursing, social care
elements or a mixture of both the most successful? Are clinicians specifically
trained to work with people with PMLD? Are family carers offered training, or
involved in the delivery of training?

What is the turnover of staff working with people with PMLD? How does staff
turnover impact upon service users and their families? How can staff turnover be
more effectively managed?

How are staff supported to work across disciplines? To what extent is
interdisciplinary working present in services?
29
People with profound and multiple learning disabilities: A review of research about their lives
Theme 7: Parent and carer issues
Important statistics have been gathered regarding parents and cares of people with
PMLD and as well as continuing with this approach research also needs to consider
the development of positive ways of working and the establishment of strong
partnership between families and statutory agencies. For example:

How are families and carers involved in the planning of services for people with
PMLD? What can family carers tell us about what they need from services? How
can effective dialogue be set up between professionals and family carers that
results in effective partnership and collaboration? Can this lead to the
development of good practice guidelines?
Theme 8: Mental health and well-being
With research still in its relative infancy, there is much to be done in raising the
profile of mental health and well being for people with PMLD. Ideas here include:

Reviewing psychiatrists’ and psychologists’ approaches to mental health in
people with PMLD. Are clinicians considering underlying mental health problems
when assessing distress or ‘challenging’ behaviours?

What is the prevalence of psychiatric disorders in the population of people with
PMLD? Can this be established? Can more sophisticated tools be developed to
further our understanding of the manifestation of mental distress in people with
limited communication skills? Can we provide more training for staff and family
carers in this area?

Can links be made between the efficacy of specific interventions and the
development of good mental health? For example, can approaches aimed at
increasing relaxation be shown to have positive impact on an individual’s mental
health?
Theme 9: Challenging behaviour
The development of good practice guidelines in working with people with challenging
behaviour161 now means that there are is a clear evidence-based approach available to
those supporting people who can present challenges. Ideas in this area therefore
include:

What is the prevalence of ‘challenging’ behaviour in people with PMLD? Does
the term need to be re-defined in the light of thinking about stereotypy and
withdrawal as being potential indicators of disengagement and/or distress?
161
Ball, T., Bush, A. & Emerson, E., (2004). Psychological interventions for severely challenging
behaviours shown by people with learning disabilities. Leicester: BPS.
30
People with profound and multiple learning disabilities: A review of research about their lives

Are the new clinical guidelines being used for working with people with PMLD?
In which ways and to what extent?
Theme 10: Physical health
As well as being a clear agenda for Valuing People, this is another core theme for
people with PMLD. Suggestions for research include:

Surveying GPs to explore their knowledge, skills and commitment to people with
PMLD. How do they link in with specialist services? Do they carry out regular
reviews of medication and specific issues?

How successfully is Health Action Planning meeting the particular health needs
of people with PMLD? Are people able to access the amount of physical
intervention they require (e.g. physiotherapy)?

How are families and support staff supported to manage increasingly
sophisticated physical health interventions? Examples here include the
management of PEG feeding or the support of complex epilepsy.
Theme 11: Personal relationships and sexuality
This is an emerging theme in the literature and therefore under-researched.
Suggestions for the directions of future work in this area include:

Review of the social networks and community relationships of people with
PMLD. How much time do people spend engaging in ‘community’ activities?
When doing so, how do supporters know that they are ‘meaningfully’ engaged in
what is offered?

Who are the people comprising individuals’ personal networks? Where family
members are not involved who fulfils the role of unconditional and emotional
support? How are these issues addressed by services?

How are sexual needs considered and addressed? Is the individual’s right to
access their own body in appropriate ways recognised and exercised? How are
staff and family carers supported to work in this sensitive but crucial area of
people’s lives?
31