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

• 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

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 referenceThese 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 aidsMany 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 passportsA 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

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

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 recommendationsImproved 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