CEY1482

Written evidence submitted by Guide Dogs

Guide Dogs is the UK’s largest charitable provider of services for children and young people with vision impairment (VI). We provide a range of services including information, advice and guidance, assistive technology products and support, and large print books through our CustomEyes service. We also deliver habilitation support through contracts held with local authorities and some schools.  

Through our work, we encounter children and young people who are not able to easily access the services and support they need to reach their potential.

Background

Children who are blind and partially sighted are not achieving the same outcomes as their sighted peers. This is having a knock-on impact on their long-term life chances and happiness. Statistically children and young people with vision impairment are likely to have lower academic attainment from early years[1] through to key stage 4[2], and have a higher chance of being outside of employment as they reach adulthood. Only 1 in 4 working age adults with vision impairment are in employment[3]. Children with vision impairment are likely to have lower levels of physical activity than their peers[4], to experience social exclusion[5] and are more likely to experience poor mental health such as anxiety[6].

The below recommendations are intended to highlight three key areas where we feel improvements to the early years and childcare system are needed to improve support to children with vision impairment.

i)                     Uplift in Disability Living Allowance

ii)                   Gaps in the specialist SEND workforce and training available to mainstream early years practitioners

iii)                 A pathway of support

Childcare Entitlements

Are the current entitlements providing parents/carers with sufficient childcare, and to what extent are childcare costs affecting parents/carers from returning to work full-time?

Recent research from Guide Dogs has found there are large additional costs to raising a child with sight loss. Some of our findings show:

1. Children with vision loss are more likely to be involved in extracurricular activities, such as swimming, music/art classes and youth clubs. These activities are generally paid for by the guardians. The costs of these activities are significantly higher for VI families than for other families and more likely to have increased. Families with a child with a vision impairment pay on average £336 per year for these activities compared to £160 for families with a non-disabled child.
2. Wraparound childcare or early years childcare can also be a large additional cost for families with a child with sight loss. As one person told us “Our biggest cost is a nanny. We would prefer to use a childminder or after school club but this is not suitable as our son needs 1:1 care”.
3. Children with VI are more likely to have to travel further to their education institute and more likely to travel in a vehicle (car, minibus or taxi) rather than walk– their parents therefore are more likely to have to pay for transport.  
1. Overall transportation costs to go to school are significantly higher for VI families and 76% of families are paying more compared to a year ago. 
4. While over half of parents are in paid employment, nearly a fifth of parents of vision impaired children claim they are full time carers today. Both parents of children with a VI and their partners are more likely to have had to change significantly the way they work since they had their child compared to the general population: reducing hours or changing shifts. This has led to parents being significantly more likely than the general population to say they have had to put family before their careers, with nearly half also agreeing that their partner has had to do the same.
1. From our research, we know that many parents feel unable to take up fulltime work due to a lack of specialist childcare “I can’t access the specialist childcare that my son would’ve needed and career opportunities are few and far between for a part time worker” and the amount of appointments families have to attend “Too many appointments and caring duties to be able to have a career when always having to take time off. Employers do not like this and are not flexible or understanding. And finding childcare before /after school with the right type of care for child's disabilities.  The cost is not covered by wages so not worth the stress of trying to juggle childcare and work.”
2. We do not feel current provisions allow for families with a child with sight loss to return to fulltime work.

We know that the majority of British families face some levels of difficulties to make ends meet and families with a child with VI are even more affected, with 80% claiming they have less disposable income than a year ago. Among those who claim benefits for their VI child, only a fifth say these benefits are sufficient to cover the extra costs incurred. 

This research is really worrying, and the additional costs could be impacting on a child’s development by families not being able to take up opportunities.

Recommendation:

• We are calling for an uplift to the amount of Disability Living Allowance Higher Mobility rate to reflect the increased cost of transport when a family has a child with sight loss.

Early years provision

What challenges do early years providers face in terms of workforce, including recruiting, and retaining qualified staff, and the barriers faced by individuals joining the profession? To what extent has the Covid-19 pandemic exacerbated workforce challenges?

Vision impairment is a low-incidence, high needs condition; therefore, it is vitally important that families and teachers have access to high quality specialist professionals such as Habilitation Specialists and Qualified Teachers of the Visually Impaired (QTVIs). Recent research commissioned by Guide Dogs and carried out by Teacher Tapp showed 69% of mainstream, non-specialist teachers lack confidence that they have the right skills to support disabled children, including those with vision impairment[7]. Of the surveyed teachers, 85% said that working with a specialist professional would make them more confident in teaching children with vision impairment to reach their full potential.

The challenges that restrict access to specialist professionals include:

• Limited training opportunities – for example currently only two courses provide Habilitation Specialists training courses with limited numbers of places[8].
• Local authorities not prioritising spending on sensory support
• Lack of knowledge about what specialist professionals do and their value

Many of the challenges that children and young people with vision impairment face can be addressed through the support of a specialist professional. As there are interconnecting and systemic reasons for the lack of this support, we believe the Government should create a Workforce Strategy to address the training and recruitment of specialist professionals working with children and young people with SEND. Without this, we do not think any reforms to the SEND system will succeed if there is not a focus on the specialist SEND workforce.

However, the lack of specialist support is also having an impact on early years provision. It is important that families with a child with VI feels confident that their child will receive high-quality support in any early years setting. Therefore, early years practitioners should be able to access specialist information from professionals such as Habilitation Specialists and QTVIs.

Recommendation:

• A Workforce Strategy is created to cover the training, recruitment, commissioning of specialist support services as well their promotion to related professionals.

Whether the Early Childhood Education and Care (ECEC) system is meeting the needs of pupils with Special Educational Needs or Disabilities (SEND), and the improvements that could be made to better support young children with SEND within early years provisions.

In 2019, only 45% of children with vision impairment as their primary SEND were assessed as having a ‘good level of development’ at the Early Years Foundation Stage (EYFS), compared with 72% of all pupils. 43% of pupils with VI achieved at least the expected standard in all 17 Early Learning Goals (ELGs) compared to 71% of all pupils[9].

Where possible we recommend that specialist professional staff, such as QTVIs or Habilitation Specialists, are involved in the two-year progress check where a child has a diagnosed vision impairment. Vision impairment is a low-incidence, high needs condition. Therefore, it is unlikely that Health Visitors, for example, would have come across many children with sight loss and therefore may not be able to provide a full range of support around the child’s disability. We see this recommendation as a long-term aspiration.

We know that when teams come together, along with specialists, this can make all the difference for supporting children.

Case study from parent highlighting what can be achieved when everyone works together:

“We had good input as we had everyone working together, including 15 hours of specialist support which enabled her to go to nursery and access to things. Portage worker was amazing and did pre-braille skills, singing etc I didn’t go back to work because I had to teach her about every part of her life. We had lots of body signs etc so she could ask for a drink etc. Early years we were very well supported and we had a keyworker who co-ordinated all the people.”

In addition, as another step to improve the support to better support young children with SEND within early years provisions, there needs to be more support offered to children with vision impairment (and their parents) from birth or from the point of diagnosis. An example of a successful model is that used by VINCYP in Scotland.

Case study: VINCYP, Scotland

Visual Impairment Network Children and Young People (VINCYP) is an NHS funded project which aims to facilitate the planning, organisation and delivery of safe, effective, integrated care and support for children and young people with severe sight impairment in Scotland and their families. The aim is for equitable access to an appropriate level of specialist and ongoing clinical and non-clinical care that is centred on individual patient need. Out of the referrals to Guide Dogs Scotland 98% come via professionals working to this pathway. VINCYP has developed standards which includes that a Qualified Habilitation Specialist provides an assessment within 4 weeks of referral. http://www.vincyp.scot.nhs.uk/

Evidence gathered by Guide Dogs as part of our ‘Creating the Future Commission[10]’ recommended the adoption of ‘care pathway’ for children and young people with vision impairment, and their parents[11]. Many parents and carers said they had led the efforts to identify, research and access support arrangements for their child’s vision impairment following diagnosis. Staff working for the Guide Dogs education advice line told us:

“There is a postcode lottery in terms of early years provision. Parents are often stressed, distraught following diagnosis and not knowing what it will look like for their child in the future; support and accurate information would have prevented this. We often still pick people up at school age and a lot of local authorities don’t support habilitation at early years and they get sporadic support from QTVIs and too many parents have to wait a long time for support. Parents often have to seek support on their own.”  

A clear care pathway would also facilitate referrals from diagnosis at hospitals to local authorities. Hospitals need to refer, and local authorities should assess a child’s need and put in place specialist professional support principally in respect to habilitation training. We have heard of cases where a hospital had 750 children with vision impairment on their books but had not referred any to the local authority.

“This whole process took 17 weeks with no information, no ownership and no sense of the seriousness of the situation for the child until they saw the hospital paediatrician who immediately identified other issues and made emergency referrals including to the community paediatrician at which point they started getting better support.”

We do not believe EHCP’s are working well enough for Early Years provision. There is no age limit on when EHCPs can be written but they are often done too late and not in a collaborative way.

In addition, habilitation provision is not always quantified and is often written about vaguely in the EHCP, resulting in low hours of provision being offered to the child. Any accompanying guidance to the new format EHCP should instruct that habilitation is included within Section F of the EHCP. Currently, local authorities tend to detail the requirement for habilitation in the health sections of the EHCP, citing it as a therapy. However, Section 21(5) Part 3 of The Children and Families Act 2014 states that “… provision which educates or trains a child or young person is to be treated as special educational provision (instead of health care provision or social care provision)”.

This support is vital for children with vision impairment to gain independence both in an education setting and in the wider world; it enables children to learn life skills which their sighted peers learn through observation.

We seek the introduction of a fifth area within Sections B and F of every plan titled ‘independence and life skills’ to ensure that the needs of children are being met in a holistic way.

As we heard from one parent:

“We’re now going through the EHCP process and it’s a joke. A lot of the time I have to contact the individuals and make sure they’ll be attending. The last one I had to keep moving the date because I was trying to get as many people and the school there as possible. I was organising it, not the local council or pre-school. Even the school that he’s going to didn’t seem to feel it was an issue whether they were there or not.”

We recommend that specialist professionals have greater involvement in preparing the Plan by attending EHCP meetings and writing reports where possible. This would ensure a more informed range of services being included within an EHCP, ensuring children have the right specialist support in place to reach their full potential.

Recommendation:

• The Government works with Guide Dogs to create a pathway of support for children with a vision impairment to ensure every child is able to access the support they need.
• Families have a variable journey from diagnosis to accessing support. We know that early intervention results in the best outcomes for children. Babies and young children who do not receive timely, specialist support are at greater risk of poor developmental outcomes, which are likely to seriously impede their later social and cognitive development[12].
• Specialists have a greater involvement in the EHCP.

Summary of Recommendations:

• Uplift to Disability Living Allowance Higher Mobility rate.
• A Workforce Strategy is created to cover the training, recruitment, commissioning of specialist support services as well their promotion to related professionals.

• The Government works with Guide Dogs to create a pathway of support for children with a vision impairment to ensure every child is able to access the support they need.
• Specialists have a greater involvement in the EHCP.

January 2023

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