Children with vision impairment waiting up to 18 months for essential life skills training
Two children in bright rain jackets and wellies, splashing in a puddle.
Only one in four Scottish councils meets the national standard for habilitation support, leaving some children waiting more than a year for help developing basic independence skills, a new report by RNIB Scotland reveals.
The report highlights a growing crisis in habilitation services- specialist training that teaches children and young people with vision impairment how to navigate their environment safely and develop essential independence skills such as preparing food or travelling to school.
Despite national guidance from the Visual Impairment Network for Children and Young People (VINCYP) stating that children should be seen within four weeks, only 25% of local authorities meet this standard. In some areas, children are waiting up to 18 months for an initial visit from a habilitation specialist.
The report, which brings together information provided by Scotland’s 32 Local Authorities via a Freedom of Information request, identified a total of 3,151 children and young people known to local authority VI services across Scotland. Provision of habilitation varies drastically, with the percentage of children accessing or awaiting habilitation ranging from 4 per cent to 90 per cent, depending on the council.
Habilitation specialists support children with vision impairment at every stage of development, from advising parents on helping a toddler walk or suggesting suitable toys, to working with schools during transition. As children grow, they teach vital independence skills such as personal care, dressing, eating, safe travel, white cane training, preparing food, and taking part in leisure activities.
First time parent, Louise who lives in Wick, shared more about her experience when her son Frankie, soon to turn one, was born.
“It took a long time to get Frankie diagnosed,” she says. “It was months of phone calls and eye health appointments, before we confirmed that his optic nerves had not developed and that he had Bilateral Optic Nerve Hypoplasia. The days that followed from there were intense and a bit of a blur, to be honest.
“This journey for me has been full of emotions. It's been grieving, loneliness, devastating and left feeling helpless. My hope for Frankie is to live the best life he can and be very happy. I never want him to think 'poor me'. He may take a little longer or have to do it in his own way, but I'll always make sure he achieves whatever he sets out to do.
“Habilitation to us now and in the future would be a tremendous help. I am a first-time mum and have never known anyone who is blind. So having a blind baby has been life-changing. To have support, especially close to us, would help make sure that we are educated and that Frankie will have the best start possible. We find our daily lives challenging- we are literally making it up as we go along. Habilitation would be crucial in educating us on making Frankie’s life easier and ensuring that he can flourish.”
Louise’s story reflects the reality for many families across Scotland who are navigate the early years of a child’s life with vision impairment without timely, specialist guidance. For children, these delays can mean missing crucial developmental milestones.
RNIB Scotland Director James Adams warns the delays in providing habilitation support risk long-term harm,
“Early intervention is critical. Every day a child goes without specialist support is a day they miss out on developing independence skills that will serve them for life. Habilitation is vital to enable them to access education and the wider world with as much independence as possible.
“RNIB Scotland calls for a clear, fully funded strategy to ensure appropriate and timely access to habilitation services for children and young people with vision impairment across Scotland. Without it, children with vision impairment face barriers to education, social life, and future employment.”
