Mencap’s response
to the Bercow Review of Speech, Language
and Communication Needs – Call for Evidence
Mencap’s consultation response
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Mencap is the leading charity working with children and adults with a
learning disability, their parents and carers
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We are fighting for a world where everyone with a learning disability has an
equal right to choice, opportunity and respect, with the support they need
Mencap’s consultation response
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Mencap’s response focuses on the speech, language and communication
needs of children and young people with profound and multiple learning
disabilities (PMLD)
We have consulted with:
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Parents of children and young people with PMLD
Professionals who work with children and young people with PMLD
Mencap’s key points
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Communication is a basic human right and must be given priority
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Children and young people with PMLD have very specific
communication needs but current support does not always meet these
needs
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There is a national shortage of speech and language therapists
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There is a poor data about numbers of children and young people with
PMLD which means it is difficult to plan effective services
Mencap’s key points
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Speech and language therapists, school staff, staff in children’s services
and parents need to be trained in non-formal communication methods and
given the support to use these methods
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There is a lack of joint working; communication support needs to be coordinated across all agencies
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There are models of good practice but these need to be extended to all
The Importance of Communication
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It’s the way we control our lives
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It’s the way we make friends
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It’s the way we become independent
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It’s the way we make choices
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It’s the way we express our feelings, thoughts and emotions
Communication – a right for all
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Children and young people with PMLD have a right – like everyone else - to
communicate
‘The child shall have the right to freedom of expression; this right shall
include freedom to seek, receive and impart information and ideas of all
kinds, regardless of frontiers, either orally, in writing or in print, in the form
of art, or though any other media of the child’s choice’
UN Convention on the Rights of the Child Article 13
Why focus on children and young people with
PMLD in this response?
‘People who cannot speak, understand words, read or write very well, or at
all, are undervalued in their societies. They are automatically excluded
unless the people around them are prepared to change’
BILD
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People with PMLD are some of the most marginalised in our society. At the
moment, their needs and rights are frequently neglected
Many people with PMLD do not use formal communication. This often
means their communication needs are not met
Why focus on children and young people with
PMLD in this response?
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All services must focus on early intervention and improving access for all
children according to their needs (Children’s NSF, 2004)
All Local Authorities and Primary Care Trusts must ensure that the supply
of timely therapy services is sufficient to meet the needs of children and
young people who require it, based on assessed needs (Children’s NSF –
disabled children, 2004)
The number of children with PMLD continues to increase. This is due to
improved diagnosis and better survival rates of pre-term infants with
complex disabilities (Epicure Study 2005). This means it is more important
than ever that the specific communication needs of people with PMLD are
planned for and met
What is PMLD?
Children and young people with PMLD:
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Have more than one disability
Have a profound learning disability
Have great difficulty communicating
May have additional sensory or physical disabilities, complex health
needs or mental health difficulties
May have behaviours that challenge us
All children and adults with PMLD need high levels of support with most
aspects of daily life.
Read the PMLD network definition of profound and multiple learning
disabilities at http://www.mencap.org.uk/html/campaigns/PMLD/Meet_the_People_definition.pdf
Meet Jessie
How do people with PMLD communicate?
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Many people with PMLD do not use formal communication, such as
speech, symbols or signs
Many people with PMLD rely on facial expressions, vocal sounds, body
language and behaviour to communicate
Some people with PMLD may not have reached the stage of using
intentional communication, and they may rely on others to interpret their
reactions to events and people
How do people with PMLD communicate?
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It is important that those who support people with PMLD spend time getting
to know their means of communication and finding effective ways to interact
with them
There are different ‘non-formal’ techniques and approaches which can be
used to help interpret the needs and choices of people with PMLD
Staff and family members should be supported to use non-formal
techniques and approaches which can help them do this
Non-formal communication techniques and
approaches
Some examples of non-formal techniques and approaches are:
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using objects of reference
These are objects that have special meanings attached to them. They are
useful for people who are unable to understand pictures or symbols
use of appropriate communication aids
Many communication aids are not appropriate for people with PMLD, for
example, voice recognition software. However, a Big Mack, which allows
noises to be recorded and activated at the push of a button, is an example
of a communication aid which can help someone with PMLD communicate.
The use of video and digital photography to capture people’s means of
communicating is being used more frequently. It is important to see this
equipment as a communication aid
Non-formal communication techniques and
approaches
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Intensive Interaction
This involves quality one-to-one time between a teacher/support worker and the
student. For more information go to: www.intensiveinteraction.co.uk
Communication passports
A communication passport presents the person positively as an individual. It draws
together information from past and present, and from different contexts, to help staff
and conversation partners understand the person, and have successful interactions. It
is a place where the person’s preferences can be recorded. The person’s preferred
means of communicating is also recorded. Some innovative practice uses digital film.
A communication passport is very helpful for helping others understand
communication
Use of multimedia
The development of computer based personal profiles has enabled service users to
have ‘a voice’ and put across their preferences in a really powerful way. It is an
approach of growing significance. For more info visit: www.acting-up.org.uk
Currently the communication needs of children
and young people with PMLD are not being met
Communication is not seen as a priority
‘Speech, communication and language is the key to independence and ½
hour of English and Maths once a week in mainstream school would not be
acceptable so why should PMLD children be restricted to only that or less?’
A parent
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Communication needs are not prioritised. This is evidenced by the fact
that ‘communication’ is not part of the Every Child Matters (ECM)
framework. Recent research is calling for this to change (SPRU)
Many children and young people with PMLD have complex health
needs. Often their health is prioritised over their communication
Currently the communication needs of children
and young people with PMLD are not being met
Lack of Training
‘Communication training is available but not resourced or prioritised to be as effective
as it might’
Health professional, PMLD Network questionnaire 2006
‘There are very few professionals with the expertise’
A Parent
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The values and beliefs that many people hold about people with PMLD are
a barrier to communication
Children and young people with PMLD sometimes find it difficult to
communicate how they feel, partly because the people who support them
often don’t have the right skills
The people who support them - speech and language therapists,
professionals, school staff and family members – are often not trained in
non-formal communication techniques
Currently the communication needs of children
and young people with PMLD are not being met
Lack of investment
‘There is a desperate need for more speech and language therapists who can spend time in
special schools’ A parent
‘Takes time to listen to parents and other carers and to observe and think laterally’ A parent
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There are not enough speech and language therapists. This means that many
people will have to wait a long time to get their communication needs assessed
Appropriate equipment, e.g. Big Macks are often not available to support a child’s
whole life (ie they may only be able to use them at school). There is limited access to
specialist support/technology
Services are often cut when child enters adulthood. People with PMLD need support
with their communication needs all through their life
Many children and young people with PMLD reach adulthood without proper
assessment of their communication needs or concerted action to meet these needs
Currently the communication needs of children
and young people with PMLD are not being met
Poor data
‘ANY child with multiple impairments that cannot follow the standard curriculum is
now called ‘PMLD’’ A parent
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School census information says that there are approx. 9,000 children and
young people aged 5 – 18 yrs with PMLD
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There is a lack of consistent approach to collecting data. People with
severe learning disabilities are often included in PMLD statistics. This lack
of a consistent approach to classification leads to poor data
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Poor data leads to ineffective planning and services which do not meet the
needs of children and young people who have PMLD
Currently the communication needs of children
and young people with PMLD are not being met
Lack of joined up planning
‘My son’s has seen about 10 different people and each one begins from scratch’ A parent
‘we need more communication between the language therapist and home’ A parent
‘The problem in our area is that speech and language therapists are funded by the health
authority and not the education authority, so their time available depends on the health budget,
over which we have no influence’ A parent
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There are few examples of joined up approaches between professionals, school staff and parents
to meet children’s communication needs. It seems to be down to luck whether the school has
managed to have a joined up approach
There is a lack of sharing of information across agencies particularly at points of transition
People around the child will change at different times during childhood. They all need to be
properly trained in non-formal communication techniques and they need to share information so
the child does not suffer at these transition points
Mencap’s recommendations
Communication needs to be seen as a priority
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Communication should be a recognised priority in all educational and
children’s services settings. It should be considered the 6th Every Child
Matters Outcome
All children with PMLD need an assessment by a speech and language
therapist and a communication programme should be developed across all
the child’s environments
This priority needs to continue through into adult services and settings
Mencap’s recommendations
Improved Training
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Each local authority should have a multi-agency training programme
around communication
People who support the children e.g. speech and language therapists,
school and support staff and other professionals, as well as family
members, need to be trained in non-formal communication methods
Awareness raising training on what PMLD is and how people with PMLD
communicate should be provided to a wider group of professionals.
Awareness raising tools such as Mencap’s Meet the People CD-ROM could
be used
Mencap’s recommendations
More Investment
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Additional funding for speech and language therapists is needed
Additional funding is needed for training, equipment and resources in order
to achieve the best method of working with a child.
Support is time-intensive. The people around the child need to invest time
in trying to find the best method of communicating with the person with
PMLD.
Shared funding across all agencies is necessary as communication aids/
equipment, where appropriate, are needed for all settings that the child
experiences and not just in school.
Mencap’s recommendations
Improved systems of data collection
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Local authorities and schools need to collect accurate data to enable better
planning of services.
They need to use a consistent approach when classifying who has PMLD
Mencap’s recommendations
Joined up planning
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There needs to be multi agency guidelines so that all agencies are cooperating to ensure that the child’s communication needs are consistently
and effectively met across all settings
Families need to be actively involved in this process
All children with PMLD should have a communication passport which goes
with them as they make key transitions between settings and children and
adult services
The communication programme needs to be regularly monitored and
evaluated by a speech and language therapist (who is trained in non-formal
communication methods)
Future contact
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We look forward to seeing the needs of children and young people with
PMLD taken into full account in the review of communication services
For further information please contact: bella.travis@mencap.org.uk
sarah.mepham@mencap.org.uk
Tel. 020 7696 5575