Imagine being locked away in the prison of your own body, unable to express your simplest needs or feelings. This painful reality can happen because of neuro-developmental disorders such as cerebral palsy and Rett Syndrome, or acquired conditions, like stroke and motor neurone disease.
While was great to see Stephen Hawking, who has MND, giving such an inspirational speech at the opening of the Paralympics, the method by which he gave his message is important too - and also sobering. Communication is what makes us human, and without the ability to communicate effectively, many people are not seen as being capable, and do not reach their potential.
Thousands of people in the UK are denied the opportunity because there is NO statutory funding for communication aids; they live without his ability to express his thoughts. Professor Hawking said, "Look at the stars, not down at your feet. Be curious". Well, I'm curious about what the government will do to support those who have a communication disability. Where is the funding for their devices?"
The recently-launched Giving Voice campaign aims to raise awareness of the problems faced by those who are unable to communicate and to campaign for funding so that all these people have the resources they need. The message about Professor Hawking, posted to the "Giving Voice" page on FaceBook received 27 shares - apparently the most for any topic ever on that page, and generated 96 likes within 24 hours.
It also stimulated people to write individual comments like this one from Fern, who wrote: "I am fortunate enough to work for a charity in NZ where the Ministry of Health funds almost all communication systems providing the client has been through a thorough assessment process. In the current age of technology where AAC systems no longer have to cost £5000 or more, it is a real shame that clients who are non-verbal do not have the means to communicate and meet their potential. Communication aids are as important to my clients as other assistive technologies such as wheelchairs or walking frames."
Alternative and Augmentative Communication is the key to helping people who cannot communicate using their own speech and voice, but the debate is not only about the funding for AAC, but also about the information on AAC that is taught to students during their formative years in university. The debate should start there, and include questions like these:
How many Speech and Language Therapists graduate with sufficient knowledge and understanding of the needs of people who are unable to use their own speech and voice to communicate?
What opportunities are there for student placements where AAC is used?
Does the current curriculum cover the theoretical aspects of AAC in sufficient detail?
Once qualified, what support is there for newly qualified Therapists to develop the specialist skills required to assess and prescribe for AAC, especially high tech devices?
The issues of funding come after that, because if Speech and Language Therapists don't prescribe the devices, then the government does not know what the need is, and funding won't be provided.
The current system is mainly dependent on individual Speech and Language Therapists to assess and prescribe, sometime through special centres for AAC such as the Assessment and Outreach Centre for the South West, where a flexible assessment service, including home visits, is offered to people of all ages throughout the region. They have a bank of AAC devices which they can provide for trial, offering training to get the most from them.
Chris Freestone, head of children's services at the Dame Hannah Roger's Trust, Ivybridge, wrote, "I passionately believe that every child deserves to be able to communicate in order to make choices. It underpins everything we do." This also applies to adults.
Communication aids range from something as basic as teaching the person how to sign, to equipping them with the latest and most sophisticated computerised equipment that might cost many thousands of pounds. Some of the latest software available for use with an iPad is even free, or can cost as little as £1,000, while other devices can be £15,000 or more. But how can you put a price on a person's ability to communicate effectively with family, friends and loved ones, and to participate in society and use social networks?
Chris went on to say, "It is brilliant that we have been able to help a person with locked in syndrome to articulate what he is thinking again. It opens up all sorts of opportunities for him to be able to express what he is feeling."
The 1998 Human Rights Act recognises that communication is not a luxury but an essential life skill, yet in the present economic climate funding for such a right can be a political minefield. Sadly it can all come down to where you live; a recent Scope report found that health and education authorities often pass the buck between one another when it comes to funding, with some even restricting usage and removing the devices out of term time.
Funding is hugely important - I hear all too often from parents that the recommendations for devices are not made because "the funding won't be available". Surely Speech and Language Therapists need to believe in the strength of their convictions and prescribe the right devices, and educate Commissioners in Health and Education to understand that the devices need to be funded from central sources, not charities or personal fund raising?