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? Inclusion and independence begins with ‘The Right to a Voice’. People who are non-speakers need an effective way to communicate so that they can be fully included in their communities. See Communication Bill of Rights
Just as people with sight impairments have Braille and audio-supports, and people with hearing impairments have an official Sign Language (NZSL), 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.
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 rights of the child and what this means for teachers). 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.
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The Communication Bill of rights (American Speech-Language-Hearing Association)
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Every child has rights poster – NZ Children’s Commissioner
It is the right of all children (and adults) who have speech impairments, to have access to AAC as soon as possible. No one should deny anyone else their own voice and means of communicating; no one should deny any child with Angelman syndrome access to a full communication system based on prerequisites, testing or demonstration of ability. The provision of a multi-modal system of communication is their fundamental Human Right.
Supporting Communication in Individuals with Angelman Syndrome
Severe speech impairments are a hallmark of Angelman Syndrome (AS), often caused by a combination of motor difficulties, atypical oral structures, intellectual disability, and oral apraxia. As a result, individuals with AS typically communicate using nonverbal methods such as sounds, gestures, and eye gaze.
A multi-modal communication approach - known as Augmentative and Alternative Communication (AAC) - can provide individuals with AS a more effective way to express themselves. AAC includes both unaided methods (like sign language and body language) and aided methods (such as alternative pencils and speech-generating devices). While these tools support learning, natural forms of communication like gestures, vocalizations, and signs remain essential for meaningful interaction.
Early AAC intervention by a Speech Language Therapist is critical for children diagnosed with Angelman Syndrome. In New Zealand, TalkLink Trust offers AAC services through funding from Whaikaha and ACC, making them free for eligible clients. When parents model AAC consistently at home, children are more likely to adopt it as a “first language.”
AAC systems should also be fully embedded in the school environment to support learning and inclusion. Because children with AS often have stronger understanding (receptive language) than expressive abilities, it’s vital to keep expectations high and always presume competence (See Presuming Maggie’s competence). Effective communication is essential for emotional wellbeing. When children face challenges expressing themselves, it can lead to frustration and difficult behaviours - often a sign of underlying issues like pain or anxiety.
For more insights, see Communication and Busting AAC Myths for Good.
The International Communication Project
The opportunity to communicate Is a basic human right. Communication rights: Fundamental human rights for all. 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.