Mencap

1
Mencaps response to the Bercow Review of
Speech, Language and Communication Needs Call
for Evidence
2
Mencaps 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

3
Mencaps consultation response

• Mencaps 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

4
Mencaps 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

5
Mencaps key points

• Speech and language therapists, school staff,
  staff in childrens 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

6
The Importance of Communication

• Its the way we control our lives
• Its the way we make friends
• Its the way we become independent
• Its the way we make choices
• Its the way we express our feelings, thoughts
  and emotions

7
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 childs
  choice
• UN Convention on the Rights of the Child Article
  13

8
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

9
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 (Childrens 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 (Childrens 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

10
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

11
Meet Jessie
12
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

13
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

14
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
  peoples means of communicating is being used
  more frequently. It is important to see this
  equipment as a communication aid

15
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 persons preferences can be recorded. The
  persons 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

16
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
• 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

17
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
• 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
  dont 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

18
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 childs 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

19
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

20
Currently the communication needs of children and
young people with PMLD are not being met

• Lack of joined up planning
• My sons 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 childrens 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

21
Mencaps recommendations

• Communication needs to be seen as a priority
• Communication should be a recognised priority in
  all educational and childrens 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
  childs environments
• This priority needs to continue through into
  adult services and settings

22
Mencaps 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 Mencaps Meet the
  People CD-ROM could be used

23
Mencaps 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.

24
Mencaps 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

25
Mencaps recommendations

• Joined up planning
• There needs to be multi agency guidelines so that
  all agencies are co-operating to ensure that the
  childs 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)

26
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_at_mencap.org.uk sarah.mepham_at_mencap.org
  .uk
• Tel. [phone]