Habilitation services need revision, argue Clare Messenger and Rory Palmer.
Every day across the UK around four children will be registered blind or partially sighted. That’s almost 1500 families this year who will be told their child is losing their sight. In the UK today there are 28,000 young people under-18 who have a vision impairment, and Guide Dogs believes every young person should be empowered and supported to achieve their full potential and live the life they choose.
Habilitation support is vital for children and young people with sight loss, teaching them how to learn independent living skills for the first time and supporting them in their development journey. A child’s existing skills are the starting point and habilitation will develop personal mobility, navigation and independent living skills. Children and young people may receive habilitation training and support at different ages, but the primary objective remains the same – to maximise a young person’s independence.
We know that when a young person receives support from Habilitation Specialists alongside Qualified Teachers of Children and Young People with Vision Impairment (QTVI) strong and empowering outcomes can be secured, making a lasting and positive impact for the young person. That’s why there should be widespread concern at the inconsistency of provision and access to habilitation services across the country.
Research carried out by Guide Dogs and Thomas Pocklington Trust shows the current system is ‘fractured and confusing’ when it comes to referral routes, eligibility criteria and provision – and we believe this is leaving significant unmet need. Based on Freedom of Information requests in 2019 to local authorities our research shows a vast range in the proportions of children and young people receiving habilitation support across different local authorities: over the 12-month period our research showed almost a third (33%) of local authorities supported less than ten children or young people with habilitation services, and just over half (53%) supported less than 20 young people. And reinforcing just how mixed this picture is, a fifth of local authorities could not provide data on this, most citing that they do not record the information.
Given the vital importance habilitation makes in supporting children and young people to develop their independence and essential life skills, it is alarming to find gaps at both ends of the age range: referral arrangements in the early years and pre-school ages are often inadequate and older young people (16+) are less likely to be offered habilitation support by local authorities. Our research found that 20% of local authority habilitation services will only accept referrals from a QTVI or medical professional. Inconsistent approaches to referrals are matched with restrictive eligibility criteria in some places: 13% restrict access to just those young people registered as having a serious sight impairment and 8% of local authorities state that to receive habilitation support a young person must have a EHC (Education, Health & Care) Plan in place; it is important to note that 80% of children and young people with visual impairment do not have a EHC Plan.
This situation of inconsistent and varied approaches across different local authorities causes frustration and confusion for families. Services and support for children, young people and their families are too often not joined up and can feel inconsistent and unfair, and parents will often speak of not knowing where to turn when their child receives a diagnosis of visual impairment or sight loss. The lack of a universal approach in how habilitation provision is accessed only serves to reinforce this frustration, with parents often left to fight lengthy, tiresome and stressful battles to secure the support their child needs to develop vital independence skills.
And beyond the challenges of accessing support and services we should be concerned at how children and young people – and their parents or carers – perceive their own sense of independence and wellbeing, and how that relates to the availability of specific services and support. Our research shows that 56% of parents feel their child was not independent and 40% feel their child lacks confidence.
At Guide Dogs we don’t believe this situation is acceptable. As a provider of habilitation services we recognise and understand just how vital this provision can be in empowering children and young people with vision impairment to lead happy and fulfilling lives. We also recognise that to secure better outcomes and more equitable access to services and support for all children and young people with vision impairment and their families, we need to see bigger and whole-system change.
Children and young people with sight loss and their families should not face a situation of uncertainty, confusion or inconsistency when it comes to accessing and securing vital services. It is unacceptable that many parents are left not knowing where to turn; the referral and service pathways should be joined-up, person-centred and consistent in all parts of the country.
To help secure that system-change and to lead towards an improved situation for children and young people with vision impairment Guide Dogs is bringing together young people with lived experience, parents and professionals working in frontline services to shape new ideas and thinking on what needs to change and what that change should be. Through assessing the landscape as we find it today, exploring recent research and data and through co-production our Creating the Future Commission will set out recommendations for a truly universal, joined-up and consistent pathway of services and support for all children and young people with sight loss, from birth of their point of diagnosis to their transition to adulthood.
It should be noted that some local authorities referenced plans to improve and widen habilitation provision and to revisit referral routes when responding to our research in 2019. However, we know from our experience working with children, young people and families every day that the situation remains one of acute concern in relation to habilitation provision and access. The impacts of the Covid-19 pandemic on education and childhood development are not yet fully known and the financial challenge facing local authorities and service providers has not improved.
This perfect storm demands urgent focus from decision-makers at all levels. We believe that whole-system change is needed to lead to that more joined-up, universal and consistent pathway of support for all children and young people with sight loss to secure better outcomes and to ensure every child, young person and family receives the specialist support they need.
You can find out more about the Guide Dogs Creating the Future Commission and read the full research report on habilitation provision, Making Childhood Equal (Guide Dogs & Thomas Pocklington Trust, 2019), at guidedogs.org. uk/CreatingTheFuture