1 VIEW conference 2014 Let's start a dialogue: are children getting the support they need? Sue Keil, RNIB Sue Wright, Action Working together to support blind and partially sighted people

2 Introduction and aims To start a dialogue with the VI sector This is a challenge for us all: How, in the current climate can we continue to support all CYP with VI appropriately and effectively? What does the evidence tell us about the current situation? What are the experiences and concerns of parents?

The current climate Children and Families Bill and new SEN Code of Practice Cuts to public sector funding "…it is clear that local government is one of the foremost casualties of austerity in the UK." "…Local government has largely coped with the cuts thus far by paring back costs and capacities. To cope with the cuts to come, it is being forced to re-consider what services it can provide and for whom." (Hastings et al, 2013, pp5 and 51)

VI services in 152 LAs in England 2011 to % of LAs had experienced changes to VI service organisation and or funding Not all changes were negative 25% of LAs had lost staff posts 13% of LAs had lost or had frozen QTVI posts 17.3 QTVI posts lost, frozen or reduced hours 31% of LAs were anticipating changes to VI service funding or organisation within the next 12 to 18 months

Reduction in provision to CYP 2011 to % of LAs had reduced or withdrawn support for at least one group of CYP The 2 groups most affected: CYP with complex needs (12 LAs) CYP whose sight was below threshold for support (12 LAs)

What eligibility criteria are VI services using? 89% of LAs use NatSIP criteria - or a modified version - to determine eligibility for VI service support Small number using clinical criteria (VA) and high threshold (6/18)

NatSIP criteria AND professional judgement "…a modified version of the Natsip criteria 2013…fits better with our way of working. The [LA] version is more inclusive of children with cortical visual impairment and early years children. Unlike Natsip the LA’s version also takes into account fields of vision and near vision acuity, not just distance..." "…a slightly amended version of the latest NatSIP support allocation matrices which means that those scoring at the lowest end of the scale are not removed from the caseload but are kept on for monitoring".

Are some VI services using the criteria in a prescriptive way to ration support? "Support is still available for pupils with a NatSip score of below 50% but it has to be requested and paid for by schools." "The adjustments [to thresholds for support] reflect implementation of the Natsip criteria."

Criteria for support based on clinical definition of VI - a slide back to a medical model of disability? "We have prioritised our work load to meet the needs of those pupils with the most severe visual impairments, across the age ranges. We no longer visit pupils below 6/18." "..The visiting criteria /threshold – CYP with vision of 6/18 or worse or N14 or worse and an identified ophthalmic condition…" "CYPs without statements will no longer be supported other than as an advisory case…If the children/young person’s vision is below 6/18…they are seen on an advisory basis only…

VI voluntary sector functional definition of VI in CYP The child or young person's vision impairment interferes with optimal development, learning and achievements, unless adaptations are made in the methods of presenting learning experiences, the nature of the materials used and/or the learning environment. (The term 'learning' includes not just academic learning but the acquisition of mobility, life and social skills that in the case of a child or young person with vision impairment would be provided through habilitation education. This definition includes children and young people with other disabilities/impairments in addition to vision impairment, including those with profound and complex needs.)

Raising thresholds for support - they are the same children Individual assessment and taking account of other SEN

CYP without EHC plan Concerns for CYP with 'mild' VI and 'mild' other types of SEN Much poorer wellbeing and educational outcomes for CYP with VI and additional SEN compared to CYP with VI only Who takes ownership? Schools don't know what they don't know Funding constraints - schools as gatekeepers? What concerns do parents have?

Parents concerns Through the RNIB helpline we receive approximately 150 educational enquiries from parents / carers each year NBCS receive approximately 200 education enquiries from parents / carers each year The majority of calls are about the provision their child is receiving at school (with or without a statement) In addition NBCS receive a high number of enquiries at the point of diagnosis and early years

Sample enquiry Child age 8 with optic dystrophy and nystagmus (indentified at 4 years old but only recent confirmed diagnosis) Registered partially sighted Parents concerned about level of support VI service wrote a report and gave advice to the school but no further input SENCO does not feel the child needs an IEP as she is ‘bright’ and is saying there is no problem

Sample enquiry Child age 3 with congenital bilateral cataracts Visual acuity not confirmed but thought to be 6/36 Lack of support from nursery Parent had received no education or home support from specialist service VI service will only take a referral from the hospital and not direct from parent Ophthalmologist saying doesn’t warrant extra support as responding to treatment Parent not aware that she has the right under COP to request an assessment

Discussion This is the start of a dialogue What do you think are the challenges in ensuring that all children and young people with VI get all the support they need?

Conclusion and next steps Collated questionnaire responses on VIEW website Discussion can continue online VIEW will take forward

References Hastings A, Bailey N, Besemer K, Bramley G, Gannon M and Watkins D (2013) Coping with the cuts? Local government and poorer communities. JRF Programme Paper: Austerity. University of Glasgow for JRF Keil S (2014) Local authority vision impairment (VI) education service provision for blind and partially sighted children and young people. Report on findings from RNIB Freedom of Information (FOI) requests London: RNIB