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)?
No
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?
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?
There is one national register that one ophthalmologist at an eye clinic is responsible for running the register and receiving data about children with visual impairments from ophthalmologists and low visions clinics in Sweden. As we do not have any legislation the data is not systematically received.
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.
Approx. 3000
2.2. The percentage compared with non-disabled children and young persons.
Approx. 0,15 percent of all children in Sweden.
2.3. The percentage based on the number of inhabitants in your country.
Approx. 0,03% percent of the whole population.
3. Please if possible indicate the specific numbers within the total amount indicated above with additional disabilities.
Approx. 1800 (minimum 60%, some experts states that the percentage is as high as 80%)
Section A. National Disability strategies
1. Is there in your country according to legislative provisions an adopted national disability strategy?
YES
A National disability plan was adopted in 2000 (1999/2000:79)
We have a national disability strategy for the period of 2011 to 2016.
We have a special authority, www.mfd, responsible for annual follow up reports of the strategy and evaluation of the goals. A number of national authorities have responsibilities for different parts of the strategy, for instance education. The strategy is an important tool in the work with the UNCRPD.
A new strategy will be adopted for the period from 2017.
If a disability strategy is adopted based on other rules or decisions than legislation, please indicate these.
2. Does your organization participate in preparing national disability strategies?
Yes
3. Are children and young persons included in such existing national disability strategies?
YES, Children's rights must be more visible within all the goals in the new strategy. Children's rights to information and participation within all areas must be ensured, for example children as victims when there are violence in the family.
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
4.1. If yes, what was the theme for the conference held?
National conference about children and young persons with multiple disabilities including visual impairment in 2014. The theme was to “see the possibilities in life”.
National conference about children and tactile reading in 2014.
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?
YES and NO
There is no legislation that ensures the coordination of support from all the parties for children with visual impairments. Parents often have to be the coordinator themselves and that is a heavy burden.
Our Health Care Act states that social and health authorities are to collaborate in order to coordinate support.
Our Social Service Act ensures collaboration amongst social, health and education authorities.
There are regulations ensuring collaboration amongst authorities in order to coordinate support within habilitation and rehabilitation when planning an individual plan.
The Swedish school law does not ensure collaboration with other parties. Although there is regulation about collaboration between special schools and children's home municipalities.
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?
Yes
3. What kind of support is in your country offered on a central and/or local level?
On a local level/municipality, Social service act, Law on the support and service for some people with disabilities, LSS – support from municipality:
- Short term accommodation
- Guide
- Contact person
- Support for home equipment
- Travel service
- Assistive devices
- Support in day care, preschool and school
Regional level, health and care act:
Support from regional low vision clinics, assistive devices, counselling and support to parents, environmental adaptation
National level, social insurance service:
- Financial support to families with children with disabilities. The amount of money is due to how much support the child needs.
- Financial support for personal assistants
- Temporary parental allowance
3.1
Yes
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?
We have two national resource centers. One for children who are blind and one for children who also have additional disabilities.
We have regional habilitation centers, low vision clinics, making the first contact with the child and the parents are taken.
3.3. Do these facilities also deal with / offer appropriate technical assistive devices?
The regional low vision clinics offer technical assistive devices and training and support
3.4. Who is responsible for updating knowledge and information?
The resource centers,
The low vision clinics.
A national authority, Myndigheten för delaktighet, www.mfd.se
Socialstyrelsen
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 assistive devices or counselling, but exchange of experiences, there is a facebook group for parents where they can share experiences.
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 – Magazine called Nya synvärlden, http://ffss.se/nya-synvarldens/
Produced and financed by an organization called Föreningen för synrehabilitering, FFSS
5.2. Children and young persons with a disability / visual impairment
YES
Oboj, a talking magazine, 6 issues per year, http://www.srf.nu/barnens-sidor/oboj/
A podcast called Oboj. Both produced and financed by Swedish Association of Visually Impaired, SRF.
Popcorn, a talking magazine, 12 issues per year.
Knottret is a Braille magazine intended for adolescents, 12 issues per year.
Both Popcorn and Knottret are produced and financed by public resources at a national authority, Myndigheten för tillgängliga medier,
http://www.mtm.se/english/About-us/newspapers-and-periodicals/
5.3. Parents to children and young persons with a disability / visual disability?
Not a separate magazine, but there are specific pages for parents within SRF's member magazine Perspektiv, www.srf.nu/informationsmaterial/vara-tidningar/srf-perspektiv/
6. Are there any leisure activities available specially developed and adapted for children and/or young persons with visual disabilities?
Yes
6.1. If yes: who is responsible for maintenance and the management?
Regional low vision centers
SRF and other organizations
Regional district within Parasport Sweden
Youth organization Unga Synskadade
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?
Yes
7.2. Financial support?
Yes
7.3. Transportation to leisure activities?
Yes
Are there 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?
Yes / No / Not aware
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?
Yes
8.1. If yes: who is responsible for running such meeting opportunities?
The low vision centers organize group activities where children and young persons can meet peers and also role models
During summer camps and other activities organized by SRF and other organizations.
Activities organized by youth organization Unga Synskadade
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?
Yes
9.1. If yes, who is responsible for running such meeting opportunities?
National resource center
Regional low vision centers
Organizations; SRF, Unga Synskadade, Aktiva Synskadade
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?
Yes
10.1. If yes: who is responsible for running such meeting opportunities?
The regional low vision centers organize formal meetings for parents of children and you persons.
The national resource center organize formal courses for parents of children with visual impairments.
Swedish association of the visually impaired organize informal activities on a local level for parents and for families.
Swedish Association of the visually impaired organize informal courses for parents on a national level.
An other organization, Aktiva synskadade, organise informal activities for families.
A parent organization organise sailing camps for families every summer and other activities.
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?
Yes
1.1. If yes, please specify area and scope of such legislation.
Health and care act, - when planning for children's habilitation
Patient law – children's right to express point of view within health and care
Social service act – when planning the child's support from municipality
School law – planning extra support in education
Law on the support and service for some people with disabilities, LSS – support from municipality
Law on parental support – child is to be heard when parent's cannot agree in custody matters
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, an independent youth organization, Riksorganisationen Unga Synskadade
3. Is there any formalized network or organization(s) of parents and relatives of children and young persons with a disability / visual impairment?
YES
- A regional parent organization in the west of Sweden, www.fsbu.org
- An organization for parents and relatives to children and young persons with Spielmeyer-Vogt disease, www.ssvf.nu
There are some local networks within SRF and they are run by SRF.
3.1. If yes, when were they set up?
FSBU was set up in the 60s
Spielmeyer Vogt was set up in 2008 after being an active group of parents since 1984.
3.2. What is their leadership structure (by parents themselves, by institutions)?
Parents for both
3.3. How are they funded (through public or private financial resources)?
Both are funded through private and public resources
3.4. If yes, is there any regular cooperation between your organization and the existing body representing parents / relatives?
YES, between FSBU and regional branch of SRF
NO – Spielmeyer Vogt
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
SRF has a children and youth council
SRF ha a parent's council
Through Swedish Association of the visually impaired, The youth organization, Unga Synskadade, Parents council
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.