The Right To A Voice
Basic Human Rights
No child can be excluded from the right to express their opinion. Meaningful participation must be based on the principles of equality, inclusion and accessibility; allowing children of all backgrounds to express their views, if they desire. Educational practice must now become inclusive beyond the classroom, ensuring the right to freedom of expression for all children, including those with learning or physical disabilities.
Children’s rights are human rights and human rights are universal. It is the right of all children (and adults) who cannot speak in words, to have access to AAC as soon as possible. No one has the right to deny anyone else their own voice and means of communicating; no one has the right to deny any child access to a full communication system based on any prerequisites, testing or demonstration of ability. Access to / the provision of a multi-modal system of communication is their fundamental Human Right.
Angelman Syndrome and Communication
Language challenges are significant for those who have Angelman Syndrome (AS). This may be due to:
Motor problems (low tone in oral area)
Oral structures (protruding tongue)
Oral apraxia (difficulty with motor planning)
As a result, people with AS have complex communication needs and most communicate by using sounds, gestures, and eye direction. People who have AS need a multi-modal communication system - AAC (Augmentative and Alternative Communication). AAC systems are diverse: unaided communication uses no equipment and includes signing and body language, while aided approaches use external tools. Aided communication methods can range from paper and pencil to communication books or boards to speech generating devices (SGDs) or devices producing written output. But while communication devices are wonderful, we mustn't ignore the important role that gestures, vocalizations and manual signs can play. Note that augmenting communication involves both speech and writing - and also technology related to teaching and learning.
Individuals with AS need a multi-modal system that allows for maximum social reciprocal communication so they can make authentic choices in the classroom and in everyday life. Ideally a child should receive AAC input from a Speech Language therapist as early as possible after a diagnoses of Angelman syndrome. There should be no prerequisites for someone with Angelman syndrome to be eligible for AAC and a communication device.
As parents learn and model language using AAC resources, so this
will become the child’s ‘first language’. This 'language system' needs
to be used seamlessly when the child begins school. Children with
AS can do well in regular classrooms when provided with the
supports needed to be successful. As their receptive language,
memory and comprehension is much greater than their output, so
high expectations for learning must be maintained. Always presume
Providing a means to communicate is essential for the wellbeing of
all people. Negative behaviours such as pulling hair, hitting, and
biting can develop and this behaviour is often caused by frustration
with communication. It can be read as an indication of some deeper
underlying issue such as pain, anger or anxiety. For more on AAC
for Angelman Syndrome, see Communication
The International Communication Project
The International Communication Project (ICP) was launched in 2014. The opportunity to communicate is a basic human right. Communication is the most fundamental of human capacities. People need to be able to communicate to fulfill their social, educational, emotional and vocational potential. Everybody has the potential to communicate. Independence and Inclusion begins with Communication. Read more on How New Zealand Is Upholding the Convention for the Rights of People with Disabilities
The Communication Revolution
Speech Language Pathologist, Jennifer Marden, has written an informative blog on the 'Angelman Revolution', outlining how the advances in AAC triggered a global shift regarding communication methods in the Angelman community, as well as among Speech-language therapists. Read her article here.
The Angelman Literacy Project was initiated by parent and advocate, Erin Sheldon in June 2015. As a result of her extensive research on this topic, Erin created an excellent resource for parents and educators which covers the complexities of AS communication and learning. It offers a range of advice and strategies to improve the teaching of communication and literacy. You can download the resource, here.
Mary-Louise Bertram, Patron for The Angelman Network, presented this slideshow at the Frambu Angelman Conference, Norway April 7-11 2014: Communication Strategies for Children and Adults with Angelman Syndrome - Mary-Louise Bertram, Loud Noises
The New Zealand Speech-language Therapists' Association ran an article in their Communication Matters journal, highlighting the progress of AAC in the Angelman global community. "In this issue, our featured organisation is The Angelman Network. Ursula Cranmer talks about the Angelman Literacy Project, barriers faced in New Zealand by people with Angelman Syndrome and those who support them, and how research and resources can help remove these barriers." Read the full story here.
The Angelman Academy - presuming potential
The recently established Angelman Academy (2018) aims to revolutionize the educational experience of individuals with Angelman Syndrome and help each individual reach their full potential. Read more here.
Inclusion and independence begins with ‘The Right to A Voice’.
Can you imagine what it must be like to have thoughts, opinion and feelings just like everyone else, yet be unable to express them in words? People who are non-speakers need an effective way to communicate so that they can be fully included in their communities. There is now ample research to support the fact that individuals who have Angelman syndrome need a multi-modal communication system that incorporates AAC (Augmentative and Alternative Communication).
‘Just as the blind have braille and the deaf have sign language, access to AAC with the correct supports, will provide a ‘first language’ for non-speaking children.’ – Ursula Christel
And this can certainly be true for AAC users. They may happily use many different modes of communication as well. It may be a combination of vocalisations, words, word attempts, pointing to pictures or photos or objects, sign language, natural gestures, body language, facial expression, as well as their AAC system. Often they will use the fastest and most efficient means of communication available to them in the moment! All of the methods of communication have their place. All of these methods of communication should be valued, respected and responded to." - Amanda Hartmann