Mencap’s response
to the Bercow Review of Speech,
Language and Communication Needs –
Call for Evidence
Mencap’s consultation
response
• Mencap is the leading charity working with children and
adults with a learning disability, their parents and
carers
• 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
• 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:
• Parents of children and young people with PMLD
• Professionals who work with children and young people
with PMLD
Mencap’s key points
• Communication is a basic human right and must be
given priority
• Children and young people with PMLD have very
specific communication needs but current support
does not always meet these needs
• There is a national shortage of speech and language
therapists
• 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
• 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
• There is a lack of joint working; communication support
needs to be co-ordinated across all agencies
• There are models of good practice but these need to be
extended to all
The Importance of
Communication
• It’s the way we control our lives
• It’s the way we make friends
• It’s the way we become independent
• It’s the way we make choices
• It’s the way we express our feelings, thoughts and
emotions
Communication – a right for
all
• 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
• 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?
• 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:
•
•
•
•
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?
• 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?
• 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:
• 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
•
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
needs of children and young
people with PMLD are not being
met
Communication is not seen as a priority
‘Speech, communication and language is
independence and ½ hour of English and
week in mainstream school would not be
why should PMLD children be restricted
less?’ A parent
the key to
Maths once a
acceptable so
to only that or
– 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
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
•
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
•
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
• School census information says that there are approx.
9,000 children and young people aged 5 – 18 yrs with
PMLD
• 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
• 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
•
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
• 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
• 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
• 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
• 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
• There needs to be multi agency guidelines so that all
agencies are co-operating 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
• 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