Shaping the future
The experiences of blind and partiallysighted children and young people
in the UK
Summaryreport
by
IssyCole-Hamilton and Dan Vale
RoyalNational Institute for the Blind, 2000.
Executive summary
Blind and partially sighted children andyoung people in the United Kingdom are entitled to enjoy the same rights andresponsibilities and to make the same types of decision as their sighted peers.In this, RNIBs Shaping the futuresummary report, over 1,000 young people between the ages of five andtwenty-five show that, for many, their chances of being able to do this in the21st century are being limited by a number of barriers.
These barriers will only be broken downwhen we understand that blind and partially sighted children and young peopleare not a homogeneous group. Their needs and aspirations are not met and cannotbe met solely by a specialised niche market of providers. They want to do thethings everyone wants to do - at the same time, in the same places and with thesame people. They want to watch television, play computer games, hang out withtheir friends, plan their careers and go out on a date. Generic services thatare aimed at all children and young people must take visual impairment andadditional disability issues into account from the very earliest stages inplanning.
In order for blind and partially sightedchildren and young people to live a full and equal life they must have choice and a voice. True choice depends on having sufficient information,support, confidence, resources and range of options. A true voice depends onthe responsiveness of the people and structures that make up the young personsenvironment. Those who have difficultycommunicating or learning as a result of more complex needs also have the rightto have their voices heard and their rights respected.
The evidence given to us by blind andpartially sighted children and young people and their parents shows that forthem to have the same opportunities for personal and social development asothers, they must challenge not only their visual impairment but also societyitself. The participants in this survey are saying that:
information is often not available in a format theycan read at the time they need it;
fully inclusive provision is not always available in education andleisure;
independence and mobility are badly affected by lack of education,hazards in the street and transport that is difficult to use;
the attitudes of others can lead to low expectations and even tothe victimisation of blind and partially sighted children and young people.
During 1998 and 1999, RNIB asked over1,000 blind and partially sighted five to twenty-five year-olds, or theirparents, about their experiences, needs and aspirations. There are 22,000 blindand partially sighted children aged 16 and under in the UK and we chose oursample to be broadly representative of them. We asked them to identify changesthat could be made to improve their lives generally. The data were gathered byquestionnaire and focus group, and the respondents were grouped by age and bylearning ability. More detailed explanation of the findings can be read in theseparate Shaping the future researchreports listed on page xx.
The children and young people
The children andyoung people who took part in the survey did so because they had sightdifficulties that were severe enough to affect their day to day lives. Justless than one third also had additional complex difficulties which affectedtheir communication, learning and motor abilities.
Those whoaccessed the curriculum within the expected range for their age, either atschool or in further and higher education, are described in these reports as'of around average learning ability. Almost one in four of this group hadlittle or no useful vision, just over half had severely reduced vision, and theremaining one in four, while requiring some support, had relatively goodvision. Of the children and youngpeople with complex additional needs, nearly six in ten had little or no usefulvision and the remaining four in ten had some useful vision.
It can bedifficult for non-specialists to understand what these degrees of sightimpairment actually mean. Only a few blind children and young people seenothing at all. Most have some perception of light, which may, for example,enable a young person to make out large shapes in a good light. Young peoplewith 'severely reduced vision' in fact cover a wide spectrum depending on theeye condition they have; there are around 80 different eye conditions and it ispossible to have more than one. Such impairment, however, may mean that theycannot use print as a means of learning and may have a considerable challengeto understand and make effective use of their environment. Some can read largeor even standard print but have severe problems getting around. Some have theopposite challenge - they cannot read print, but they may be able to navigatetheir environment reasonably well. Those whose vision is 'relatively good' neverthelessneed support to read, often preferring large print, and they are typicallyvulnerable in unfamiliar environments. Some young people need good light tomake best use of the sight they have, while others function best in low light.The point is that every child and young person with impaired sight is differentand has unique challenges and needs.
Visualimpairment is frequently one manifestation of more complex conditions andaccompanied by other impairments or difficulties. Nearly four in ten of the school- age pupils and one in fivestudents in further and higher education, of around average learning ability,had additional disabilities. Theseincluded, in particular, physical disability and hearing loss.
Most of thechildren and young people with complex additional needs had multiply disablingconditions which affected their communication, learning, mobility or day to dayliving skills. For example, one in four of the school-age children had cerebralpalsy. Many had very complex needs affecting their ability to be independent ina number of ways. Two thirds of thesechildren were dependent on others for almost all of their needs - to communicate, move around, wash, dressand eat. These children and young people will need high levels of support fortheir entire lives, though with the right education and support they can oftenachieve a great deal.
Education
The Shapingthe future survey included pupils and students from a range of educationalsettings. The vast majority of those ofaround average learning ability were in mainstream education but a significantproportion attended specialist education designated for those with impairedvision. The children and young peoplewith additional complex needs were, however, more likely to attend specialschools, not specifically resourced for those with impaired vision.
The evidence from the survey shows thatsupport in many areas must improve if inclusive provision is to meet the needsof blind and partially sighted pupils and students as well as designatedspecialist education for those with impaired vision does. Access to coursematerial, equipment, activities and resources is often inadequate in mainstreameducation, as the following examples show.
One inthree blind and partially sighted pupils in mainstream secondary schools didnot always get their school test and exam papers in their preferred format.
One in foursecondary pupils in mainstream schools said they did not usually get handoutsin a format they preferred.
One in fivesecondary pupils did not have the necessary specialist equipment to do theirhomework.
Half of theuniversity students did not usually get their books in the right format.
Five in sixuniversity students said that their coursework took them longer than theirsighted friends.
One inthree mainstream secondary pupils said they felt left out of some classroomactivities because of their impaired vision.
Two in fivesecondary school pupils of around average learning ability said that theirsight had affected their choice of GCSE or Standard Grade subjects.
Geography,science and physical education were found to be less accessible than othersubjects.
Half of theparents whose children had complex additional needs were not in touch withtheir local authority specialist visual impairment teaching service.
Two inthree parents of children with complex additional needs who felt their childneeded an 'interpreter'* said there was never one available.
[Set as footnote] [ *Increasingly'intervenors' are working with these children to help them develop theircommunication skills and to express their needs and ideas. In focus groupsparents were aware of their child's need for this type of support but tended touse the word 'interpreter' rather than 'intervenor'. The questionnaire thereforeused the word 'interpreter'.]
One inthree parents of children with complex additional needs said their child wasleft out of activities at school because of their disabilities.
Socialand leisure activities
Blind and partially sighted children andyoung people are restricted in their opportunities for leisure activities by alack of accessible pastimes.
Three infour parents of children with complex additional needs said there were nosuitable local play activities for their child to attend during holidays.
Almost halfof school-age children and young people of around average learning ability hadexperienced problems at clubs because of their impaired sight, prompting two infive of them to stop attending.
More thanone in four said there were clubs and activities which they would have like totake part in at school, but had not done so, of whom one in six said this wasdue to their sight difficulty.
More thanone in three 16-25 year-olds had experienced problems at clubs or societies.
Gettingout and about
Blind and partially sighted children andyoung people are less likely than sighted peers to travel independently andconfidently because of a lack of mobility education and the difficulties theyencounter on the streets and in using public transport.
Of those of around average learningability:
fewer thanthree in ten pupils in mainstream schools had been given mobility andindependence education;
nine in tenprimary-aged children and over eight in ten of those of secondary ageencountered difficulties when out and about;
the streetenvironment caused problems for nine in ten primary and seven in ten secondaryschool children and young people;
lack ofself-confidence in travelling was an issue for six in ten primary and over onein three secondary school pupils;
two inthree 16-25 year-olds also experienced difficulties in travelling.
Attitudesand awareness
While the majority of children and youngpeople feel confident, the attitudes of others can make many feel isolated.
Among the 11-25 year-olds of aroundaverage learning ability:
more thanfour in five felt that most people were willing to help once they understoodabout their sight;
more thantwo in five said that others did not believe that people with sightdifficulties could cope on their own;
over one infour said they had been bullied a lot;
childrenand young people were just as likely to have been bullied in specialist schools as in mainstream.
Most parents of blind and partiallysighted children with complex additional needs feel that, in general, otherpeople are very helpful, but:
four in tensaid that other people made rude remarks about their child;
two out ofthree said people whispered about them;
nine out often said that people stared at them.
Healthand wellbeing
Children with complex additional needsand their parents are not getting the support or information about social andhealth care that they need.
Only halfthe children with complex additional needs had a social worker.
Only one infour parents thought all the agencies worked well together.
Over one inthree parents said they had negative experiences of hospital visits.
Three infive parents had difficulty in finding suitable toys for their child.
Nearlythree in five children had no access to free short break or respite care.
RNIB is calling for:
1.Equality of access to books and information with sighted peers inwhatever format is preferred - large print, tape or braille.
2.Improved access to technological advances including, for example, informationand communications technology and digital technology.
3.More activities, particularly during the school holidays, which areaccessible to blind and partially sighted children and young people with andwithout complex additional needs.
4.More and better mobility and independence education, from an early age,for all blind and partially sighted children and young people.
Action to promote and deliver change cantake a number of forms including, for example, the piloting of innovativeschemes, training of existing and new staff, identifying, promoting anddisseminating exemplars of successful practice, and campaigning.
To underpin and support these activitieswe will be emphasising the need for:
greaterrecognition of the potential and abilities of all blind and partially sightedchildren and young people;
a greatervoice for children and young people themselves;
increasedsupport and resources for inclusive education;
increasedaccess to inclusive mainstream facilities and activities;
more opportunitiesto take part in specialised activities for those with similar abilities andexperiences;
appropriate,timely support for parents and families;
greatercollaboration between agencies working with and for blind and partially sightedchildren and young people and their families;
young blindand partially sighted people and their advocates organising campaigningactivities themselves.
RNIBs recommendations
1. Attitudes and awareness
Blind and partially sighted children andyoung people say that attitudes towards disabled people must changefundamentally. RNIB recommends that:
schools,colleges and universities with policies relating to pupils and students withspecial educational needs should set targets for staff training in disabilityequality and awareness, including awareness of disability legislation;
localauthorities should ensure that induction and in-service training for frontlinestaff working in public services includes a disability equality component;
blind andpartially sighted pupils should be actively involved in the development andmonitoring of school anti-bullying policies;
citizenshipeducation should include a strong component on inclusion and disabilityequality issues;
careersservices should proactively promote employment prospects to blind and partiallysighted young people.
2. Education
Equality in education
At the time of writing, the proposedDisability Rights in Education legislation extends many of the provisions ofthe Disability Discrimination Act 1995 to children and young people ineducation. Full implementation of the legislation will be fundamental to itssuccess. RNIB recommends that:
schools,colleges and universities should ensure that all disabled children and youngpeople know about and fully understand their rights under the legislation,including their right to redress;
teachertraining at basic and in-service level should incorporate detailed discussionof the implications of the legislation for the day-to-day work of all educationprofessionals;
local educationadvisory teaching services should receive training in the implications ofDisability Rights in Education legislation;
educationauthorities should be required to make clear statements about how they willmonitor the implementation of the Disability Rights in Education legislation.
Inclusiveeducation
In the drive towards inclusive education,legislators and education providers must accept that inclusion is as much aboutthe ethos and social life of schools, colleges and universities as it is aboutaccess to the curriculum. RNIB recommends that:
theGovernment should ensure, through clearly defined and monitored QualityStandards, that, as part of their inclusive education strategies, allmainstream provision is required to meet the needs of pupils with a range ofsensory, physical and learning abilities and that this is properly resourced;
all educational establishments policies, practices and proceduresshould show how they will develop and monitor activities in which blind andpartially sighted children and students are able to participate;
the role of specialist provision for those with visual impairment indeveloping and supporting good practice in inclusive education should be fullyevaluated;
alterations to premises paid for through statutory funding schemesshould always take account of the needs of blind and partially sighted pupilsand students;
Early Years and Childcare Partnerships throughout the UK should makethe development of inclusive childcare and out-of-school provision central tothe planning of local services.
Accessibleinformation
Children and young people should always have study and testmaterial in a format they can use. RNIB recommends that:
i educationestablishments should have explicit policies to ensure that written informationavailable to sighted pupils and students is always available to those who areblind or partially sighted, in their preferred format, at the time they needit;
i teachers should be given appropriate resources and time to allow themto plan for the provision of materials in the right format;
i education establishments should ensure that all materials producedcomply with RNIBs guidelines for print, tape and braille (RNIB, 1999).
3. Social and leisure activities
Physical and social activities andopportunities to form friendships are crucial to the healthy development of anyyoung person, but many blind and partially sighted children and young peoplefeel excluded from these pursuits. RNIB recommends that:
i informationabout leisure activities should be made fully accessible and comprehensivelypublicised;
i staffinvolved in running leisure centres and organised activities for children andyoung people should be trained and supported to develop activities in whicheveryone can participate;
i moreactivities and equipment specifically designed for blind and partially sightedchildren and young people should be provided by education establishments andlocal authorities;
i localauthorities should work with parents and young disabled people to design fullyaccessible play spaces;
i digitaltelevision and broadcasting should be made fully accessible to blind andpartially sighted children and young people.
4. Getting out and about
The ability to negotiate public transportand the street environment safely and confidently is crucial to independenceand self-confidence. RNIB recommends that:
i localauthorities should ensure that mobility and independence education is availableto all blind and partially sighted children and young people. These programmesshould take place in domestic and new environments as well as in educationalsettings;
i transportoperators should ensure that all journey and announcement information is fullyaccessible;
i all frontline transport staff should receive disability equality and awareness training;
i help forblind and partially sighted children and young people and their carers shouldbe available at all railway and coach stations at all times;
i publictransport stations and vehicles should be fully accessible;
i localauthorities should require clear and accessible signposting of any hazardsplaced on pavements, that all crossings are accessibly marked and that vehiclesand bicycles are kept from pavements;
i localauthorities should include visual impairment criteria in their local transportplans.
5. Health and well-being
Comprehensive packages of care that aredeveloped in collaboration with all relevant service providers, the parents andthe child are crucial for the healthy development of all blind and partiallysighted children. RNIB recommends that:
i socialservices and social work inspectors should carefully monitor assessment ofchildren in need under the Children Acts and Order to ensure they promoteequitable service provision;
i localauthorities should ensure that there is adequate provision of a range of shortbreak and respite services to meet the needs of different families;
i furtherresources should be put into the development of link worker and other similarschemes to improve inter-agency collaboration;
i PrimaryHealth Care Trusts and other National Health Service providers shouldexplicitly define how health services for children with complex needs candeliver the best possible care in collaboration with other services;
i health andbenefits information should always be available and publicised in large print,tape and braille;
i informationabout eye conditions and local support networks should always be provided byhealth care professionals at the point of diagnosis.
The Shaping the future questionnairesurveys and focus groups provided us with unparalleled information about thecurrent picture of life for blind and partially sighted children and youngpeople in the UK. It is the first project that elicits a significant quantityof its evidence from the children and young people themselves in such depth.This provides RNIB with a firm mandate for encouraging the continuation ofcurrent good practice in service provision and urging change, where change isnecessary.
Reference
RNIB (1999). Seeit Right guidelines. RNIB, London