Creating blind spots?
Councils failing to identify blind children’s needs
Submission to Care Bill Committee – February 2014
Local authorities in England are required to maintain registers of disabled children, including blind and partially sighted children, under the 1989 Children Act[1].
RNIB has been examining councils’ registers. We undertook a Freedom of Information request in November 2013[2]. The main results are cause for significant concern:
-20% of local authorities have no register;
-three councils include just 1% of the disabled children known to the authority;
-one in four authorities hold registers with fewer than 2% of disabled children known to the council; and
-almost six in ten councils included 10% or fewer disabled children.
Failing to hold and maintain effective registers means families of blind and partially sighted and other disabled children are being failed by local authorities – and that councils cannot plan to meet the needs of their local population.
Parents of blind and partially sighted children have told RNIB that they feel “invisible” to local authorities when they plan services.
But failing to hold and maintain registers generates ‘blind spots’ for councils who will be forced to meet more extensive needs when families are identified too late.
Why registers are important
Councils are legally required to keep a register of disabled children. It is massive cause for concern that one in five local authorities declared to RNIB that they failed to meet this legal requirement.
Registers benefit children and their families by providing access to additional help and support from the council, including from social services and the local education authority.
Having a blind or partially sighted child on the register can also help families access support from other sources, including central government. Some families can access the Blue Badge scheme or cheaper TV licenses for example. Failing to maintain a register means this ‘passport’ function is lost to families often struggling to cope with a blind or partially sighted child[3].
Registers should also be used by councils to monitor demand for support from local blind and partially sighted children and assist authorities in planning services to meet local needs.
The number of blind and partially sighted people is increasing[4] and councils must plan to meet this growing need. Councils must also commission services to support families of blind and partially sighted children. Councils should also ensure the ‘transition’ period into adult services is as seamless as possible for children as they age. This is only possible with a well maintained register.
Registers can also help ensure more timely interventions and support is provided. In 2012 the Care Quality Commission (CQC) reported on the lack of effective identification of disabled children meant delays to essential services. The CQC revealed that in nine areas children were waiting over 51 weeks for wheelchairs for example – and five Primary Care Trusts claimed there were zero disabled children living in their area[5]. Health authorities and councils share responsibility for identifying disabled children. The failure to do so reported to the CQC means delays to basic but essential support being provided and could contribute towards more cost-intensive interventions being required as needs go unaddressed and progress/develop further.
Maintaining a register can be cost effective. Failing to map and meet blind and partially sighted disabled people’s needs can mean that crises are reached before councils are aware of blind/partially sighted people or other disabled people.
Early intervention and meeting lower level needs can support independence of individuals/families and save councils money. It was estimated in 2009 that £25m per year is the cost of falls alone that could be avoided if low level needs were met according to research by Access Economics[6].
Maintaining a register which identifies needs and allows a local authority to plan services to support blind and partially sighted children and their family can contribute to longer-term savings.
What we asked and our findings
We asked authorities:
- if they held a register of disabled children, and if it included blind and partially sighted children;
- how many children were registered;
- how many children had a Special Educational Needs statement in the local authority area; and
- how many children were on a School Action or School Action Plus scheme in the local authority area[7].
Some children with an SEN Statement or on School Action/School Action Plus schemes will meet the legal definition of ‘disability’[8]. More effective registers could include these children – and their families could then benefit from the child being better supported as well as authorities being better able to plan and commission services to meet future demands.
Some authorities proved adept at ensuring registers reflected these children. Hull, Oldham, Rutland and Nottingham City councils all hold registers which include the same or more disabled children than have anSEN Statement or School Action/School Action Plus scheme in the local authority area.
But these authorities sadly proved the exception to the general trend:
-20% of authorities have no register;
-three councils (Southwark, Warrington and West Berkshire) have registers which include just 1% of the disabled children known to the local authority;
-one in four authorities had a register with fewer than 2% of disabled children known to the council; and
-almost six in ten councils included 10% or fewer local disabled children.
Twenty-eight local authorities stated they did not have a register of disabled children. They are listed below in alphabetical order:
Bournemouth, Bromley, Calderdale, Cheshire East, City of London, Darlington, Derbyshire, Devon, Doncaster, East Riding, East Sussex, Essex, Herefordshire, Knowsley, Newham, North Yorkshire, Oxfordshire, Reading, Solihull, Somerset, St Helens, Stockport, Sunderland, Tameside, Warwickshire, West Sussex and Windsor and Maidenhead.
Inadequate data collection – and the impact on families
The figures local authorities provided RNIB do not match the data provided by other sources and suggest a worrying lack of authoritative information at local level.
The Department for Education (DfE) publishes statistics on pupils with a statement of SEN or who are recorded as being at School Action Plus.
In January 2013 just over 13,000 pupils in England were identified as having visual impairments as their primary or secondary SEN.
In comparison, our November 2013 inquiry findings identified just under 11,400 blind and partially sighted children with statements or at School Action Plus. A further 7,240 were at School Action, bringing the total to just over 18,600.
But a separate RNIB Freedom of Information request to local authorities which asked for the number on Vision Impairment service caseloads identified 25,700 blind and partially sighted children and young people (0-18 years of age) in 150 local authorities in England.
This figure is consistent with the 0.2% estimated prevalence of children in the UK who meet the WHO definition of vision impairment that is cited in the Royal College of Ophthalmologists guidance on ophthalmic services for children[9].
This suggests a third or more of the total number of blind and partially sighted children are missing from SEN or at School Action Plus reported by local authorities to DfE in 2012 and to RNIB in 2013. This highlights the inconsistency of the different data sources held within local authorities. But it also indicates that the national data held by DfE (based on the Schools Census) significantly under-represents the number of children and young people with vision impairment in England, further undermining how services are planned and commissioned at local level.
For some families, this may mean missing out on support and access to help.
But it also means councils are not planning support to help families adequately, or preparing future services to meet the needs of blind and partially sighted children as they age and their vision and associated needs develop.
What we are seeking
Blind and partially sighted people need a care and support system that identifies needs, sensitively supports rehabilitation and independence and enables blind and partially sighted people to continue participating and contributing to society.
The new framework must ensure that:
-support is accessible to blind and partially sighted people;
-registers identify support needs and help councils plan and commission services as needs develop and blind and partially sighted people age;
-rehabilitation is personalised and helps facilitate independence and control for blind and partially sighted people; and
-charges for services do not prevent access/rehabilitation.
RNIB believes that the Care Bill currently in parliament affords an opportunity to ensure registers are better maintained for children in England which, in turn, will ensure councils better plan to meet needs as children reach adult care services (for example).
The Care Bill is specifically for adults in England but clause 76provides for adult registers and could easily be extended to include disabled children[10].
As our evidence shows, the Bill also needs to improve registers if they are to be useful for authorities in providing adult care services and if families of blind and partially sighted children are to be better supported.
In House of Commons Written Answers from November 2013 the Minister for Care and Support, Norman Lamb MP, replied to a question from Mary Glindon MP stating:
“Local authorities have a legal duty to keep a register of people who are severely sight impaired and partially sight impaired. This requirement is retained under the Care Bill. The register will help to ensure that visually impaired people can receive proper assessments of their support needs.”
But the Bill only covers adults and would leave a significant loophole for disabled children. Adult registers would also be undermined as the evidence on weak (or none at all for 20% of England councils) children’s registers could mean adults also missing out or only being identified by councils at crisis points.
Current plans for a statutory requirement for adults would be undermined by our evidence that councils do not routinely monitor/record the needs of disabled children – presenting a significant challenge when children reach the age they will need adult services.
The negative outcome of our Freedom of Information request is backed up by further evidence showing that councils:
-routinely fail to include blind and partially sighted people’s needs in Joint Strategic Needs Assessments (JSNAs)[11]; and
-have failed to meet the needs of disproportionate numbers of blind and partially sighted people; 43% fewer blind and partially sighted people were receiving council social care services in 2013 compared with 2005 for example[12].
A maintained register would help authorities better plan to meet blind and partially sighted (and other disabled) people’s needs.
Contact/further information
For further information on this short report, RNIB, the Freedom of Information request or our Care Bill concerns please contact:
- Neil Coyle, UK Parliamentary Manager:
- Tara Melton, Campaigns Officer:
Appendix: RNIB Freedom of Information request
On 6th November 2013 RNIB asked all (152) local authorities in England:
1) Does your authority hold a register of disabled children; is it separate to any register of disabled adults you may hold; and does your register record blind and partially sighted children specifically?
2) How many children are on your disability register? And how many are blind or partially sighted?
3) How many children with SEN statements are there in your local authority area? And how many are blind or partially sighted?
4) How many children are on School Action plans in your local authority area? And how many are blind or partially sighted?
5) How many children are on School Action Plus plans in your local authority area? And how many are blind or partially sighted?
6) Please tell us anything else you'd like about how you ensure blind and partially sighted children's needs are identified and met in your area
The legal response date for councils was 4th December 2013. Nine authorities had failed to reply by 10thJanuary 2014.
[1] For information on this duty and the 1989 Act see:
[2] Our FOI request is attached as an appendix.
[3] For information on registers and the potential benefits to blind and partially sighted people visit:
[4] See:
[5] The CQC report is online at:
[6] The research is available online at:
[7] School Action and School Action Plus schemes are designed to assist pupils in mainstream education with support needs. School Action is in-school support; School Action Plus involves the local education authority. For further information on the schemes please visit:
[8] The Equality Act definition of disability is available online at: https://www.gov.uk/definition-of-disability-under-equality-act-2010
[9]RCO, 2012. See:
[10] Clause 76 of the Care Bill can be viewed online at:
[11] JSNAs were introduced from 2008 to help identify the health and social care needs of local populations for council/NHS services. RNIB 2013 research on JSNAs and visual impairment is available online at:
[12] For information on how blind and partially sighted people have disproportionately lost access to services see: