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Minimum standards for low vision services in Europe
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Minimumstandards
for low visionservices in Europe
This brochure is the outcome of the low vision activity that was part of EBU´s BASIC project2014
Editorial group: EBU low vision project team members Birgitta J. Blokland (EBU LV projectcoordinator), Barbara Krejči -Piry (EBU LV network coordinator), Joyce van Boven (optometrist,low vision expert in videology) and Susanne Trefzer (optometrist and low vision rehabilitationexpert trainer) Text: Birgitta J. BloklandPhoto editing: ArtCoCover design and lay-out: Preyfot, S.LPictures: Soffis textbyrå, ArtCo, Juha Seppälä, NIH-national eye institute, Sight SaversInternational, Harry Geyskens, EBU archiveThe brochure is available in print and electronic format
© Copyright EBU - November 2014Full credit must be given to EBU when reproducing or otherwise using (part of) the textcontained in this publication.
EBU Office: 6 rue Gager-Gabillot, 75015 Paris, France Tel: +33 1 47 05 38 20 | Fax: +33 1 47 05 38 21 E-mail: [email protected] | website: www.euroblind.orgEBU is a registered charity under French law,105073P.
This EBU publication has been supported by the European Union Programme for Employmentand Social Solidarity - PROGRESS (2007-2013). The information it contains does not necessarilyreflect the position or opinion of the European Commission
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CONTENTS:
UNCRPD article 26 ............................................................ 2
BACKGROUND.................................................................. 2
MINIMUM STANDARDS..................................................... 4
Rights-based ............................................................. 4
Personalised.............................................................. 4
Assessed with NinePlus parameters......................... 4
Well designed programme ........................................ 5
By a team of properly trained professionals ............. 6
On time and ongoing ................................................ 7
In accessible, easy-to-reach facilities ....................... 7
Free of charge or at low cost .................................... 7
Raising awareness .................................................... 8
Prevention and early detection of sight loss............. 8
IMPLEMENTATION............................................................. 9
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UNCRPD Article 26 “Habilitation and rehabilitation” in the UNConvention on the rights of persons with disabilities, reads: “States
Parties shall take effective and appropriate measures, including throughpeer support, to enable persons with disabilities to attain and maintainmaximum independence, full physical, mental, social and vocational
ability, and full inclusion and participation in all aspects of life.
To that end, States Parties shall organize, strengthen and extendcomprehensive habilitation and rehabilitation services and
programmes, particularly in the areas of health, employment, educationand social services”.
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BACKGROUND
There are more than 30 million blindand partially sighted people ingeographical Europe. And with thegrowing population of elderly, thisnumber will only increase in thecoming years.
The vast majority of people withsight loss have low vision or partialsight, two terms for the samecondition that we will usethroughout this brochure.
Low vision is a condition in whichvision cannot be corrected byglasses, contact lenses, surgery ormedicine. Having low vision meansthat, despite treatment or glasses,everyday tasks are found difficult toperform. For instance, reading themail, writing, shopping, cooking,watching TV, getting around(orientation and mobility).
There are many different causes forsight loss that can affect childrenand adults of all ages. Diabetes,Glaucoma, cataracts, RetinitisPigmentosa, Macular Degeneration,Uveitis, Albinism, a tumor, eye-injury, and side-effects of medicaltreatment are some examples.Irreversible sight loss is also highlyage-related and common amongpeople over 65, and women are athigher risk than men. Low vision isnot always visible, and therefore adisability that is often notunderstood
Individuals with partial sight canhave very different amounts ofvision and ways of seeing andtherefore have very different needsfor support and services. Theirspecific needs can only be metadequately in a personalized way.
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Someone whose sight isdeteriorating, needscomprehensive rehabilitation atthe earliest possible stage:support, training, aids andservices must be available to themfree of charge or at low cost andmeet their individual needs andcircumstances, based onassessment of their low visionwith both functional and medicalparameters. Local provision of lowvision services at easy-to-reach,accessible facilities by a team ofproperly trained, highly skilled lowvision professionals is equallyessential to adequately help allthose affected by low vision to liveindependently and take part insociety as they did before thesight loss.
Yet low vision support andrehabilitation services differsignificantly between EBUmember countries. Some haveexcellent, high quality servicesavailable to anyone with a needfor support. In other countries low
vision services are not available toall with sight loss, and in overone-third of EBU countries no lowvision services exist. That meansthat a huge number of personswith sight loss have no access toadequate low vision services andare excluded from their right tosupport that enables them to liveindependently and to participateactively in social, economic,political and cultural life.
This urgently calls for the adoptionand implementation in all 44 EBUcountries of binding minimumstandards for low vision servicesin Europe, in compliance with the
UNCRPD.
In this brochure EBUrecommends a set of tenminimum standards for lowvision services in Europe: tenkey elements for adequatelow vision support andrehabilitation services, basedon good practice in EBUcountries and on the resultsof almost two decades of lowvision work in EBU to whichso many have contributed.
Good vision
Vision with AMD Cataract
Glaucoma Diabetic retinopathy
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GiiI
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MINIMUM STANDARDS FOR LOW VISION SERVICES IN EUROPE
Ten recommendations for adequatelow vision rehabilitation andsupport services:
1. RIGHTS-BASED
All persons with sight loss of allages and both genders have theright to adequate rehabilitation andsupport services. Therefore lowvision services must be availableand accessible to everyone,whether they have moderate tosevere low vision, or a conditionaffecting functional vision.
Good practice: In EBU countrieswhere good low vision services areprovided, all residents with sightloss, regardless of nationality, ageor gender, have access to andreceive low vision services.
2. PERSONALISED
Different forms of low vision requiredifferent solutions. Individual needsand circumstances must be met.Whether a person experiences lowvision from birth or early childhood,or later in life is also a factor totake into consideration. Andobviously the needs of a childdiffer from those of a (young) adultor senior.
A personalised programme is bestto adequately and most effectivelymeet each individual´s service andsupport needs in various areas ofdaily life activities in home, school,work and leisure settings.
ood practice: For the process ofdentifying personal needs, practicalnstruments such as the Activitynventory (AI) list, are very helpful.
3. ASSESSED WITH NinePlus
PARAMETERS
There are many different eyeconditions and each one produce adifferent form of vision distortion. Inorder to guarantee access toadequate services that meetindividual needs, the standard ofusing a combined set of NinePlusmedical and functional parametersfor low vision assessment isessential to determine the extent ofsight loss and its impact on dailylife.
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The NinePlus parameters are: ◼ Low contrast sensitivity◼ Light adaptation and light
sensitivity◼ Glare sensitivity◼ Colour vision◼ Night vision◼ Fixation◼ Magnification needed to read
a newspaper print◼ Visual acuity near and far ◼ Visual field including
hemianopsia, scotomas andfloaters
PLUS:◼ Diplopia◼ Horror fusionis◼ Metamorphopsia◼ Dominance of the worse eye◼ Fatigue◼ Reading – low reading vision,
low reading speed, manyreading errors, reading span,amount of light needed.
Good practice: These NinePlusparameters are already common
practice in European countries wheregood to excellent low vision servicesare provided.
Two real-case examples: Male, 36 years old, has StevensJohnson Syndrome and has no tearsecretion. The first minutes aftermoistening his eyes with artificialtears, his visual acuity is 0.40 with agood visual field. Due to the paincaused by cornea erosions he canonly open his eyes for a fewseconds in dim light. In normal orbright light he cannot open them atall. There was no treatment found.He is admitted to rehabilitationservices.
Female, 22 years old, acquired braininjury with a paresis of the rightgaze direction. An extremetorticollis. Her visual acuity is 0.60with a good visual field. In normalhead position her visual acuitydropsto <0.05. There was no treatmentfound. She is accepted forrehabilitation.
4. WELL DESIGNED PROGRAMME
Once the functional low vision andthe individual needs andcircumstances are assessed, anadequate plan can be designed forone or more priority areas.
Using visual potential must be anoption. Partially sighted personsgenerally wish to use their residualvisual capacities, however small, asmuch and for as long as possible,
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even when deteriorating furtherover time. They require visualsolutions in combined with lowvision aids, and additional tactileand/or audio support. Learning newstrategies to best use their visualpotential, and receiving training inusing all necessary optical devicesand aids that allow optimum use ofthe residual sight is a crucial part oflow vision rehabilitation.
Other elements of a low visionsupport and rehabilitation servicesplan include support in adapting thehome, school and workenvironments to the new situationwith lighting, colours, contrast, etc.Training in daily living skills to planand undertake activities, includingleisure activities, orientation andmobility, self-defence, self-esteem,aids and training to accessinformation, as well as all emotional,psychological and practical support
that people with sight loss, and theirfamilies, may need.
Good practice: A well designedservice programme is result-orientedand has clear, practical goals set foreach priority area, identifying theskills, capacities, support, aids andtraining required.
5. BY A TEAM OF PROPERLY
TRAINED PROFESSIONALS
Adequate low vision services includea multi-disciplinary team of properlytrained, highly skilled low visionprofessionals to help those affectedby low vision to live as independentlyas possible and take part in societyas they did before the sight loss.
Communication and goodcoordination between theprofessionals providing services indifferent areas is key to ensureefficient support and to avoid overlapor voids in the service programme.
A multidisciplinary team may consistof: ophthalmologist, optometrist,social worker, low vision specialist,occupational therapist, psychologist,specialist in mobility and orientation,daily living skills, computer training,and maybe some other specificspecialists such as an orthoptist, arheumatologist.
Good practice: In countries withexcellent low vision services,professional low vision rehabilitationexpert training is available.
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6. ON TIME AND ONGOING
Most commonly, theophthalmologist refers a patient tolow vision services when the needfor low vision support arises. Thiscan be either upon indication orrequest of the patient, or fromobservation of the ophthalmologist.It is important for a patient to alsohave the possibility to directlycontact low vision service providersfor an assessment.
While some people have stable lowvision, others may experiencefurther deterioration over time,requiring additional or different lowvision rehabilitation and support,adapted to the new situation. Thishas to be accommodated.
7. IN ACCESSIBLE & EASY-TO-
REACH FACILITIES
Low vision services must beavailable close to home in easy-to-reach, accessible public or privatehospitals and rehabilitation centres,governmental agencies, NGOs,community based services, privatespecialised optometrists, or inother organizations.
Good practice: In most countrieswith excellent low vision services,rehabilitation and support areprovided in hospitals and specialrehabilitation centres close tohome with the option for longer,temporary rehabilitation away fromhome.
8. FREE OF CHARGE or at low
cost
All people with sight loss in EBUcountries can enjoy their right toaccess adequate rehabilitation andsupport services if these areprovided free of charge or at lowcost.
The provision of rehabilitation andsupport services, both for partiallysighted and blind people, shouldbe free of charge or very affordablein all EBU member countries.Financing must be assured independent of donations andcharities.
Rehabilitation services should bestate funded. In EBU countries withgood rehabilitation and supportservices for both blind and partiallysighted people, such services areprovided through the social securitysystem and health-insurance. Alsoin the majority of countries thatcurrently only provide services forthe blind, the cost is covered by thestate, and the same must apply forthose with sight loss needing lowvision services.
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All countries should strive for anational eye care plan that includeslow vision as well as blindnesswithin their national health caresystem.
9. RAISING AWARENESS
Not everyone knows that low visionsupport and services are availableto them. Some are struggling dayto day with bad eyesight for a longtime before they find out thatsolutions like a CCTV or visiontraining exist.It is essential to raise awarenessamongst the general public andhealth care professionals, such asfamily doctors, of availablesupport and rehabilitation servicesfor persons with sight loss. Fulland accessible information has tobe widely spread. Hospitals,service providers and EBUnational organisations arestrategic partners in providing
information through campaignsand a variety of communicationchannels in accessible formats.
10. PREVENTION and early
detection of sight loss
Campaigns for prevention andearly diagnosis can be sightsaving.
In cooperation with hospitals,schools, elderly homes,companies, local authorities andother partners, the EBU nationalorganisation can developcampaigns for regular eye-checks,information on sight loss,avoidable blindness, and supportand rehabilitation services for bothblind and partially sighted persons.
A good practice example is theOpto-bus, where people can havetheir eyes checked and thattravels to elderly homes and toschools. In other countriesschools provide the possibility fora yearly check by anophthalmologist and optometristwho visit the school.
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IMPLEMENTATION
Promotion and lobbying for theadoption and implementation of theminimum standards for low visionservices in Europe are based on theUNCRPD: The right to adequatesupport and rehabilitation servicesfor both blind and partially sightedpeople of all ages and bothgenders.
National organisations adhere toEBU´s objectives, principles, andcommitment to working equally forblind and partially sighted people ofboth genders and all ages.Therefore, national organisationsare to include low vision in theirpolicies, strategies and activities toprotect the rights and promote theinterests of both blind and partiallysighted people in Europe.
◼ Take necessary action topromote and implement theMinimum standards for lowvision services in Europe;
◼ Raise awareness about lowvision and its impact on daily life;
◼ Include low vision needs whenpromoting and lobbying foraccessible information, goods,services and environment;
◼ Support prevention and earlydiagnosis programmes
◼ Promote and lobby for anational eye-care plan thatincludes both blindness andlow vision;
◼ Cooperate with rehabilitationservice providers, monitoringand supporting programmes;
◼ Participate in national VISION2020 initiatives;
◼ Promote the ratification andimplementation of the UNCRPD
READ MOREVisit the EBU website for moreinformation, background papers anduseful links:http://www.euroblind.org/working-areas/low-vision/ The full text of the UNCRPDarticle26: http://www.un.org/disabilities/default.asp?id=286
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