Parents of visually-impaired children speak out over lack of specialist care
More than half of parents with visually-impaired children in Northern Ireland believe they do not receive enough specialist care to help their development, new research has revealed.
The study from Blind Children UK in Northern Ireland, a leading charity for children and young people with sight loss, has discovered that parents are struggling to get expert help to ensure their children reach their full potential.
The charity is now calling on the government to implement what are known as habilitation standards to bring the region in line with colleagues in England and Scotland. Habilitation Support helps children to understand the world around them, engage and enable independence.
The study, entitled 'Raising a child with sight loss: A scoping study of parent experience in NI' reveals that the provision of basic support is patchy and parents feel ill-equipped and under-informed about the help and support available. Key findings of the research showed that 54% of parents with a visually impaired child aged up to four years old did not receive help to develop their child's co-ordination. And 56% of parents with a child aged five to 11 have not received help to develop movement and independence skills.
The research also showed 38% of parents were "constantly worry about the future". The charity says the "stark fact" remains that almost 66% of blind and partially sighted people never get a job or remain on benefits because they have missed out on the critical building blocks of independence.
It is estimated that this costs the UK economy £4.34bn in indirect costs, such as unpaid carer costs and reduced employment rates.
Fiona Brown, NI manager of Blind Children UK, said before 2013 there was no habilitation provision in Northern Ireland.
"In 2015 so far, we have been working with 70 families across Northern Ireland and that number is growing at a rate of eight referrals a month," she said.
"Northern Ireland is relatively late to the race to provide Habilitation Support for families of children with sight loss. We are behind developments in England, where legislation for the provision of habilitation was passed in 2014 and in Scotland where legislation is due in 2016."
Michelle Bateson (40) from Limavady, whose four-year-old daughter Elodie is visually impaired, spoke about the importance of receiving specialist care at an early stage.
"Following Elodie's diagnosis we received very little practical advice. There were no habilitation services in Northern Ireland at that time," she said.
"So we realised very early on that we would be her best teachers and eventually we found out about a clinic at Great Ormond Street that could provide the help we weren't getting at home.
"Elodie is now a very skilled little four-year-old and is confident in learning new things and exploring her environment.
"Unfortunately, her vision has been declining. Sadly, she no longer sees colours or is able to recognise me without hearing my voice or touching me. Our story is very different to other families, in a way, we have been lucky knowing that early intervention was so important for Elodie and now getting habilitation support from Blind Children UK."