THE RIGHT TO A VOICE
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.
Inclusion and independence begins with ‘The Right to a Voice’. Just as people with sight impairments have Braille and audio-supports, and people with hearing impairments have an official Sign Language, so do non-speaking people need access to AAC. With the correct supports, this can provide a ‘first language’ for them, too.
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).
‘
Children's Rights in NZ
Children’s rights are human rights and human rights are universal. No child can be excluded from the right to express their opinion (The Right to be heard,Article 12). 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.
-
The Communication Bill of rights (American Speech-Language-Hearing Association)
-
Every child has rights poster – NZ Children’s Commissioner
No one should deny anyone else their own voice and means of communicating; no one should deny any child with AS access to a full communication system based on prerequisites, testing or demonstration of ability. It is the right of all children (and adults) who have speech impairments, to have access to AAC as soon as possible. The provision of a multi-modal system of communication is their fundamental Human Right.
A Voice for Individuals with Angelman syndrome
Severe speech impairments are a notable characteristic for individuals with Angelman Syndrome (AS), caused by factors like motor problems, oral structures, intellectual disability, and oral apraxia. Consequently, they will often rely on sounds, gestures, and eye direction to communicate.
A multi-modal communication system, such as Augmentative and Alternative Communication (AAC), provides a clearer 'voice' for people with Angelman syndrome. AAC can be tools, systems, devices or strategies, and includes both unaided communication (like signing and body language) and aided methods (from alternative pencils to speech-generating devices). While communication devices on their own are helpful for learning at school, gestures, vocalizations, and manual signs are also crucial for the child to get their message across effectively.
Early AAC intervention from a Speech Language Therapist is key for children with a diagnoses of Angelman syndrome (See Talklink). Parents modeling AAC everyday at home will help the child adopt it as their 'first language.' AAC systems should be seamlessly integrated into school settings, where the child can succeed with the right support. Their receptive language and comprehension abilities are stronger than their expressive skills, so maintaining high expectations is important. Always presume competence.
Effective communication is crucial for wellbeing. Frustration from communication challenges can rapidly lead to negative behaviours, often signaling deeper issues like pain or anxiety. For more on AAC for Angelman Syndrome, see Communication and Busting AAC myths for good
The International Communication Project
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.
Launched in 2014, the International Communication Project (ICP) advocates for people with communication disability (associated with speech, language and communication impairments), as well as their families, caregivers and communication professionals. The ICP highlights the importance of human communication and how communication impairments significantly impact every aspect of life.