What is the problem?
Communication is not simply about the ability to speak but also the ability to hear and understand what is said to us.
Some people may find it hard to ask a question, name an object or ask for help, while others may have problems processing information and difficulties with reading and writing.
An individual with Cerebral Palsy can have a difficulty in any one or more of these areas. However, it is most common that people with CP have difficulties speaking or controlling the parts of the body necessary to produce speech, such as the tongue, lips and vocal cords.
How do we manage it?
A speech and language therapist is the best person to talk to about a person’s speech and communication. They can teach exercises to improve breath control and the articulation of speech sounds as well as introduce manual signs, if appropriate. A speech and language therapist will also be knowledgeable about various AAC systems that support communication.
Speech and Language Therapy departments operate an open referral system which means any one can make a referral on your behalf. E.g. G.P, Consultant, OT, Physio, dietician or social worker.
You can also make a self-referral into your local service. You can find the contact details for your local service on NHS Choices website where you can search for your local service. http://www.nhs.uk/service-search
If you are looking to access a private therapist, you can search therapists in your local area by postcode through the Association of Speech therapists in Independent Practice (ASLTIP).www.helpwithtalking.com
Communication aids
A communication aid helps an individual to communicate more effectively with people around them. Communication aids are also referred to as AAC devices. AAC stands for Augmentative and Alternative Communication.
What is AAC?
Augmentative and Alternative Communication (AAC) covers a huge range of techniques which support, or replace, spoken communication. There are two main types of AAC systems: unaided communication and aided communication.
Unaided communication does not use additional equipment. People typically use body language, gesture, vocalisation or signing.
Aided communication uses equipment and can either be low-tech e.g. a communication book that you can carry around or high-tech that use devices with specially designed programs that can be personalised. iPads and other tablets and are now increasingly being used to help individuals communicate. Training and ongoing support are vital factors in determining someone’s successful use of a communication aid.
An AAC system can augment speech skills or offer an alternative format to speech that facilitates language and communication skills. This can support adults and young people with CP gain independence, and access environments that might have been previously problematic. There are many examples of AAC devices facilitating adults living with Cerebral Palsy to access the work place.
What type of AAC system should I choose?
There is no one-size-fits-all AAC system for Cerebral Palsy, but there are a variety of options. You can seek advice from a speech and language therapist, or through a specialist AAC assessment centre.
Your needs may change over time and your requirements for communication may change in different environments and points of transition in your life. You may need to be reassessed and consider different options more than once in your life.
The type of AAC system that is right for you will be dependent on various factors.
- personal preference,
- your skills, abilities and needs
- method of access,
- environmental factors
- funding
Funding
For adults, the situation for funding varies from area to area. Some Health Authorities, ICS’s and social service departments have a budget, but many adults have to buy equipment themselves, fundraise or borrow equipment from charity. Your local speech and language therapy service should be able to access local NHS funding for non-specialist funding.
There are regional services, funded directly by NHS England, for the AAC population with the most complex AAC needs. They provide equipment following an assessment for clients who meet the NHS England eligibility criteria.
If you are a young adult, you may be able to claim a Disabled Student Allowance (DSA) to pay for specialist equipment you need while studying at college or university.
Resources
Useful Organisations
Communication Matters work in conjunction with the AAC Specialist Services to provide information about local service provision and how to access funding and support for AAC assessment and equipment. They also hold a suppliers database.
International Society for Augmentative and Alternative Communication (ISAAC) works to improve the lives of children and adults with complex communication needs. ISAAC’s goal is to create worldwide awareness about how AAC can support individuals without speech.
Communication Access UK is an initiative developed in partnership by charities and organisations that share a vision to improve the lives of people with communication difficulties. The hope is to help individual’s businesses and organisation to better support people with communication difficulties. They have developed a communication symbol for businesses underpinned by a free training package and set of standards.
Royal College of Speech and Language Therapists is the professional body for speech and language therapists in the UK. Their mission is to create better lives for all people with communication and swallowing needs.
Watch Michael Cash from Voiceitt:
Scarlett Murray is a 22 year-old mother of one, and a talented writer who blogs about her experiences of living with Cerebral Palsy. Her form of CP is left-sided hemiphlegia. She tells us her story.
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Clive Gilbert is a leading policy expert on assistive technology for disabled people, drawing in part, on his own experiences living with Cerebral Palsy. He tells us his story.
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