United Kingdom - Article 7

Note: A glossary is available at the end of this document.

Preliminary issues

1.    In your country, is there, following legislative measures, a national register that systematically receives data and other useful information pertaining to all children and young persons with a visual impairment of 0-18 years of age (or a register operating according to different age criteria)?

Yes. The National Pupil Database, which can be accessed here:http://www.adls.ac.uk/department-for-education/dcsf-npd/?detail

Certain criteria apply as to who can access this though (in line with Data Protection legislation).

1.1.     If yes, what are the criteria, if any, related to degree of sight loss, age or other conditions related to vision, or any other preconditions for being admitted to the register?

The NPD identifies blind and partially sighted pupils whose visual impairment has been recognised and recorded as a primary or secondary SEN (Special Educational Need).

1.2.     If there is a register, but not based on legislative measures, what is the basis for the establishment and running of such a register?

N/A

2.    Please give:

2.1.     The number of children and young persons up to and including 18 years of age in your country with a visual disability.

The estimated number of children who are blind or partially sighted aged 0-16 in England is 21,343 (figures from 2014)

2.2.     The percentage compared with non-disabled children and young persons.

Two in every 1,000 (0.2%) children and young people up to the age of 25 in the UK have vision impairment based on the WHO definition. This is an underestimate because it does not include children whose vision impairment does not meet the WHO definition but affects them educationally and socially.

5 in every 10,000 (0.05%) of children up to the age of 16 are severely sight impaired/blind. This group of children is included within the overall 0.2% estimate above.

2.3.     The percentage based on the number of inhabitants in your country.

N/A

3. Please if possible indicate the specific numbers within the total amount indicated above with additional disabilities.
UK
Ages 0-16: 26,000
Ages 0-18: 29,000
Ages 0-25: 41,000
England
Ages 0-16: 22,000
Ages 0-18: 24,000
Ages 0-25: 34,000

[Further information can be found via the following page under 'Key statistics for Children and Young People': http://www.rnib.org.uk/knowledge-and-research-hub/key-information-and-statistics

Section A. National Disability strategies

1.    Is there in your country according to legislative provisions an adopted national disability strategy?

There is anti discriminatory legislation, in the form of The Equality Act (2010). There is also, as part of the Department for Work and Pensions the Office for Disability Isues (ODI) whose remit is to “support the development of policies to remove inequality between disabled and non-disabled people.” https://www.gov.uk/government/organisations/office-for-disability-issues

There is also the Fulfilling Potential strategy which is cross-departmental:

https://www.gov.uk/government/collections/fulfilling-potential-working-together-to-improve-the-lives-of-disabled-people

If a disability strategy is adopted based on other rules or decisions than legislation, please indicate these.

N/A

2.    Does your organization participate in preparing national disability strategies?

RNIB responds to pre- and post-legislative consultation exercises.

3.    Are children and young persons included in such existing national disability strategies?

In as much as their representative organisations are involved in consultations.

3.1.     If no: Is your organization striving to ensure that this is improved?

N/A

4.    Has there been any type of national conference or similar coordinated gathering with the goal of focusing on children and young persons with disabilities / specifically children and young persons with a visual impairment within the last five years?

Yes: For instance the Children's Visual Impairment Conference in 2015 (

http://www.gloucestershire.gov.uk/schoolsnet/CHttpHandler.ashx?id=62504&p=0

) and a signficant stream in the Vision UK Conference 2016, and the

National Conference On Visually Impaired Children And Young People conference (2013)

http://www.insightradio.co.uk/national-childrens-conference-2013.html#.V_K-sPArLIU

4.1.     If yes, what was the theme for the conference held?

See above links.

Section B. Support from the local part of society towards families with children with a visual impairment.

European countries are to a large extent heading towards an educational system in which all children and young persons have access to inclusive education taking place in mainstream schools and other inclusive social measures. Hence, it is required that the society must offer support to children and young persons with a visual disability as well as to their families.

1.    Is there in your country legislation or other requirements that ensures collaboration amongst social, health and educational authorities with a purpose to coordinate information and proper measures?

The Ministry of Education is responsible for the education of all children, including children with disabilities.

2.    Is there specific legislation in your country that guarantees that families with children or young persons with disabilities / a visual impairment receive support from the national or local authorities?

The Children and Families Act 2014 (along with the Equality Act 2010)

3.    What kind of support is in your country offered on a central and/or local level?

Support varies – the policies are in place, but implementation varies. In some cases, parents have to fight for resources, or even pay themselves. Cuts to Local Authority funding also jeopardize the expansiveness with which policies are implemented.

3.1.     Are there national institutions that offer special competence and knowledge or other agencies that offer counselling and support to parents with children and young persons with a disability, including children and young persons with visual disabilities?

Yes – the RNIB has a helpline for all people with sight loss (and their families) amongst other support. Guide Dogs for the Blind have a children and young people's service. Regarding other disabilities, the UK has a rich network of Disabled People's Organisations and assistive specialist organisations for a range of disabilities.

3.2.     If yes, where does the responsibility lie for running such facilities, taking the initiative making the first contact with the parents, gathering experience and knowledge etc., at national or local level?

This varies. RNIB is advocating and fundraising for sight loss advisors to be in every facility where someone may be informed they will lose their sight, who would go on to signpost support and options.

3.3.     Do these facilities also deal with / offer appropriate technical assistive devices?

RNIB can advise on assistive devices. In terms of funding, there is public funding available to make mainstream education inclusive. A new system has been introduced to support the Children and Families Act 2014 in England, but local authority funding has been reduced so provision is under threat and patchy depending on area.

3.4.     Who is responsible for updating knowledge and information?

N/A

4.    Are there coordinated private initiatives, where parents with children and young persons with disabilities / visual disabilities may obtain consultation and support (for example, advice, counselling, and assistive devices for pedagogical / educational purposes)?

Not aware

5.    Are there any magazines, newsletters or publications financed by public resources or private funding specifically for:

5.1.     Employees/personnel that work on a daily basis with children and/or young persons with a disability / with a visual  impairment

Yes. RNIB offers support and tools for teachers: http://www.rnib.org.uk/services-we-offer-advice-professionals/education-professionals

5.2.     Children and young persons with a disability / visual  impairment

Yes – Again, RNIB has a section online with resources:

http://www.rnib.org.uk/young-people

. Also Moorfields hospital has an excellent website section for children http://www.eyesite.nhs.uk/Home

5.3.     Parents to children and young persons with a disability / visual disability?

Yes – Again RNIB's online resources:

http://www.rnib.org.uk/information-everyday-living-family-friends-and-carers/resources-parents-blind-or-partially-sighted

6.    Are there any leisure activities available specially developed and adapted for children and/or young persons with visual disabilities?

Yes. RNIB signposts leisure activities here:

http://www.rnib.org.uk/young-people-free-time/sport-and-leisure

Furthermore, the UK has a strong audio description set up, both for television and in cinemas and theatres.

6.1.     If yes: who is responsible for maintenance and the management?

Varies – see above.

7.    In your country, is there an arrangement either constituted by legal requirements or established on a voluntary basis, through which children and young persons with a disability / visual disability may have the right to:

7.1.     Sighted guides / company?

Not aware

7.2.     Financial support?

Yes. They can receive additional financial support through child benefits and the Disability Living Allowance (https://www.gov.uk/disability-living-allowance-children/overview

7.3.     Transportation to leisure activities?

This could be covered by above.

8.    Are there exist formal or informal opportunities by which children and/or young persons with a visual impairment may meet / spend time together with their peers (children facing the same challenges) and meet mentors / role models?

Various organisations bring young people with sight loss together informally. Haggeye in Scotland, for instance. http://www.rnib.org.uk/scotland/youth-engagement

8.1.     If yes: who is responsible for running such meeting opportunities?

Local parent groups or larger national organisations such as RNIB and Guide Dogs.

9.    Are there any formal or informal opportunities for children and young persons with a visual impairment to meet adults with a visual impairment in order to meet role models / mentors?

Not aware

9.1.     If yes, who is responsible for running such meeting opportunities?

Not aware

10.     Are there any formal or informal arrangements by which parents of children and young persons with a visual impairment may meet other families in similar situations?

Not aware

10.1.     If yes: who is responsible for running such meeting opportunities?

The Organization of Parents with Children with visual impairments and Danish Association of the Blind.

Section C. Opportunities for children and young persons with a disability / visual impairment and their organizations to be consulted on issues that involve or concern them.

According to the UNCRPD, children and young persons with a disability are entitled to express their opinion / point of view regarding all issues pertaining to their lives and conditions.

1.    Is there any existing legislation in your country generally, or within the specific social, educational or the health area that ensures that children and young persons with a disability / a visual impairment have the opportunity / right to express their points of view pertaining to their specific situation or to general issues pertaining to disability policies?

Not aware

1.1.     If yes, please specify area and scope of such legislation.

2.    Do the national organizations of blind and partially sighted persons in your country have a functioning subdivision, wing or independent representative organization with specific focus on issues relating to children and young persons?

Yes: RNIB has a Children, Young People and Families Team

3.    Is there any formalized network or organization(s) of parents and relatives of children and young persons with a disability / visual impairment?

Blind Children UK http://www.blindchildrenuk.org/how-we-can-help-you (formerly National Blind Children's Society – or NBCS

3.1.     If yes, when were they set up?

Not aware

3.2.     What is their leadership structure (by parents themselves, by institutions)?

They became part of the Guide Dogs structure in 2013.

3.3.     How are they funded (through public or private financial resources)?

3.4.     If yes, is there any regular cooperation between your organization and the existing body representing parents / relatives?

4.    Are there formal or informal forum/opportunities for children, young persons with a visual impairment or their parents through representative bodies to express concerns or points of view on issues that affect them?

Yes: informal via the forums mentioned above in section 5.

Glossary

Blind: WHO has established precise criteria for the definition of this term. However, for all practical purposes, we suggest that the term means: Reduced sight to a degree where the person in question has so little residual sight that he/she cannot use vision to read, needs a white cane to undertake mobility and must use a screen reader to access information from the computer.

Children: According to the Convention of the Right of Children this means persons from age 0-18 years, but in this questionnaire the age limits are 0-12 years 

Visually impaired: Includes all persons with a severe  sight loss despite the degree (i.e. blind and partially sighted as defined above).

Local legislation / Authorities: Provisions / authorities that pertain to the specific regions / districts / municipalities.

Mentor: A peer or friend older of age with a visual impairment that may serve as an informal role model (non-professional).

National legislation / authorities: Legislation / authorities that cover the entire country.

Organisations for the blind: organizations / institutions / agencies the mission of which is to provide services or otherwise assist and improve the conditions for persons with a visual impairment.

Organisations of the blind: Representative organizations where the majority of the members and the leadership constitute of persons with a visual impairment.

Partially Sighted: WHO has set out specific criteria for this condition. However, for all practical purposes, we suggest that persons are considered partially sighted, if their vision lies in the area above blindness /see above) and under 1/3 (6/18) of normal sight.

Young persons: In this questionnaire persons of age from 12-18 years of age.