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 Act1.
RNIB has been examining councils’ registers. We undertook a Freedom
of Information request in November 20132. 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.
1
For information on this duty and the 1989 Act see:
http://www.dls.org.uk/advice/factsheet/community_care/assessments_and_services_for_disabled_chil
dren/Assessments%20and%20Services%20for%20Disabled%20Children.pdf
2 Our FOI request is attached as an appendix.
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 child3.
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 increasing4 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
area5. 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.
3
For information on registers and the potential benefits to blind and partially sighted people visit:
http://www.rnib.org.uk/livingwithsightloss/registeringsightloss/Pages/registration_benefits.aspx
4 See: http://www.rnib.org.uk/aboutus/Research/reports/2009andearlier/FSUK_Report.pdf
5 The CQC report is online at: http://socialwelfare.bl.uk/subject-areas/services-client-groups/childrendisabilities/carequalitycommission/154788health_care_for_disabled_children.pdf
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
Economics6.
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 area7.
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 an
6
The research is available online at:
http://www.rnib.org.uk/aboutus/Research/reports/otherresearch/Pages/fsluk1.aspx
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:
http://www.specialeducationalneeds.co.uk/school-action-and-school-action-plus.html
8 The Equality Act definition of disability is available online at: https://www.gov.uk/definition-ofdisability-under-equality-act-2010
SEN 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 (018 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 children9.
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
9
RCO, 2012. See:
www.rcophth.ac.uk%2Fcore%2Fcore_picker%2Fdownload.asp%3Fid%3D125&ei=JynhUqqZErLo7Ab
n24HACQ&usg=AFQjCNF2Js-Tqfgf1ijZcxKW2i6wJt2muQ&bvm=bv.59568121,d.ZGU
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 76 provides
for adult registers and could easily be extended to include disabled
children10.
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
10
Clause 76 of the Care Bill can be viewed online at:
http://www.publications.parliament.uk/pa/bills/cbill/2013-2014/0123/cbill_201320140123_en_8.htm#pt1-pb19-l1g76
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: http://www.rnib.org.uk/getinvolved/campaign/yoursight/Documents/saving-moneylosing-sight-executive-summary-pdf.pdf
- 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 example12.
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: Neil.Coyle@RNIB.org.uk
 Tara Melton, Campaigns Officer: Tara.Melton@RNIB.org.uk
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 10th January 2014.
12
For information on how blind and partially sighted people have disproportionately lost access to
services see:
https://www.rnib.org.uk/GETINVOLVED/CAMPAIGN/POLICY/SOCIALCARE/REPORTS/Pages/facingblindness-alone.aspx