World-famous advocate for people who are deafblind, Helen Keller, paid us a special visit in 1948 as part of her worldwide tour. Keller, whose birthday is still celebrated internationally on 27 June each year, was living proof that a team-based approach to working with children who are blind and deafblind, helps them reach their potential.

This approach is just as relevant today, says NextSense Vision Consultant Tricia d’Apice, who argues we must continue building on Keller’s legacy. Keeping braille on the agenda if we want to advance literacy and develop a love of reading for leisure in those with vision loss, should remain a key priority.

Tricia is working on doing exactly that. She has developed a braille assessment tool that helps professional teams make recommendations about literacy options for children with vision loss.

The tool is designed for children with low vision who do not know braille. It considers their whole environment, quantifying the functional use of vision and their learning goals alongside the clinical understanding of vision (diagnosis, visual acuity, and visual fields for example). This helps experts recommend whether a child would benefit from learning braille.

‘Vision assessments are typically done in a clinical setting, and don’t consider how the child manages in their own environment or outside, in bright light,’ Tricia says.

‘So, we developed the braille assessment to look at both functional and clinical information about a child with vision loss—we assess the whole child, their literacy skills, and preferences.’

‘If a child is not identified as needing to use braille, the assessment tool makes recommendations on other literacy options and whether it is important to keep braille on the agenda for that child. The team around each child is critical to making these recommendations. Even if braille is not taken up immediately, it’s important to keep it on the agenda as people’s situations change.’

Tricia adapted the approach taken by researchers AJ Koenig and MC Holbrook to build the tool.

Now, she and NextSense Institute researcher and academic Dr Sue Silveira are consulting with South Pacific Educators in Vision Impairment (SPEVI) members in a validity study, to ensure the tool is evidence-based.

Advocacy on the world stage

Their foundational work forms part of the broader advocacy work our staff are involved in to continue the work of pioneers such as Helen Keller.

NextSense lecturer and researcher Dr Frances Gentle recently addressed the United Nations in New York about the under-representation of children with deafblindness and multiple disabilities in education and society.

Frances, President of the International Council for Education of People with Visual Impairment, told the General Debate of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities that children and adults with deafblindness remain marginalised.

She said the evidence showed that people with deafblindness face barriers to inclusion in all aspects of life, across education, health, work, standard of living and social protection. She highlighted the importance of education inclusion as essential in developing a child’s ability to communicate. Support from trained teachers and others, adapted curricula, individual educational programming, and access to assistive devices, technologies, and interpreters had been identified by the World Federation of the Deafblind as key to advancing outcomes for children, Dr Gentle said.