Passed by the Althingi on 13 March 2003.
The aim of this Act is to ensure that children with severe developmental disorders which may result in handicaps are provided with diagnosis, counselling and other remedies aimed at ameliorating the consequences of their disorders, and also to ensure the acquisition, maintenance and dissemination of professional knowledge and skills in this field.
For this purpose, the state shall operate an institution, the State Diagnostic and Counselling Centre, to serve the whole country.
For the purposes of this Act, the following terms are used as defined below:
1. Severe developmental disturbance refers to a condition, congenital or acquired, which results in a substantial deviation in development and capacity from what is considered normal and hinders the individual from adapting to the ordinary demands made of him by society without special assistance during his formative years.
2. Handicap refers to a condition in which the individual requires services and assistance of many types on a long-term basis due to a severe developmental disorder or other reduction of abilities.
3. Primary diagnosis refers to a formal assessment of development and abilities following a suspicion of deviation in development.
4. Diagnosis refers to examination involving consultation between specialists using internationally recognised methods so as to assess the nature of the disorder, classify it according to international diagnostic standards and to confirm the existence of a handicap, where appropriate. Furthermore, diagnosis involves an assessment of the individual’;;s abilities and personal circumstances which can be used as a basis for specialised counselling and treatment.
5. Counselling refers to providing the individual’;;s parents or guardians and service-providers with information on the nature of the child’;;s developmental disorder and its prognosis, and with guidance regarding services and treatment possibilities aimed at ameliorating the consequences of the disorder. Counselling also involves giving advice on assistance designed to reduce the effects of the disorder on the individual’;;s family.
6. Follow-up measures refers to the monitoring of the individual’;;s circumstances and progress, and ensuring that he receives the appropriate services such as counselling, special education, training and treatment, social support and auxiliary devices, and also reassessment of his abilities and circumstances, as appropriate.
Before an individual is referred to the State Diagnostic and Counselling Centre, a primary diagnosis shall have been carried out as provided for under Articles 17 and 18 of the Disabled Persons Act, No 59/1992.
Primary diagnosis may be carried out, in particular, by the following: hospital paediatrics departments, the primary schools’;; special services, the pre-schools’;; counselling and psychological services, specialists at the regional offices for handicapped persons’;; affairs, health-service institutions’;; diagnostic teams, the Icelandic Low-Vision Clinic, the National Hearing and Speech Institute of Iceland and various other specialists.
The State Diagnostic and Counselling Centre
The functions of the State Diagnostic and Counselling Centre are as follows.
1. To diagnose children and young people with severe developmental disorders who are referred to it for diagnosis following primary diagnosis.
2. To provide counselling and information for the individuals involved, their parents and other relatives and service-providers concerning the appropriate treatment, training and other remedies necessary.
3. Referring individuals to other providers of treatment and other institutions so that they will receive the services necessary in each individual case.
4. Long-term follow-up measures for those individuals who suffer from unusually complex or rare developmental disorders.
5. Providing professional assistance and consultancy services to collaborating parties as provided for in the third paragraph of this article concerning, e.g.:
a. the development and operation of diagnostic and counselling services,
b. the education and training of staff,
c. special equipment and access for the handicapped,
d. surveys of the personal circumstances and needs of handicapped individuals,
e. comments regarding services and placement in care.
6. The acquisition and dissemination of knowledge and skills in the field of handicaps and severe developmental disorders, including keeping abreast of new developments internationally.
7. The development, study and dissemination of methods and materials for the diagnosis of handicaps and developmental disorders and of various methods of treatment.
8. Academic studies of acquired and congenital handicaps and developmental disorders, and participation in international collaboration in fields including that of rare handicaps.
9. Education in the field of handicaps and developmental disorders and the publication of educational materials.
The centre shall primarily serve those who are aged 0-18 years (cf. Article 1).
The centre shall confer with other parties concerning services, teaching and research in the fields of handicaps and developmental disorders, e.g. the regional offices for handicapped persons’;; affairs, those local authorities that have taken over the provision of services for the handicapped, the local authorities’;; social services, the primary schools’;; specialised services, the pre-schools’;; counselling and psychological services, health-service institutions, third-level educational institutions, the Director-General of Public Health, the administrative board for handicapped person’;;s affairs, regional councils for handicapped persons’;; affairs and handicapped persons’;; interest groups.
The Minister of Social Affairs shall appoint the Director of the State Diagnostic and Counselling Centre for terms of five years at a time. The director shall hold a university degree and have specialist knowledge in the field of handicaps and developmental disorders . The director shall exercise control of the centre, formulate policy in its work and represent it vis-à-vis other parties. He shall be responsible for the running of the centre and for ensuring that it functions in accordance with the law and administrative instructions. The director shall also be in charge of engaging other staff. The Minister of Social Affairs shall issue the director with his letter of appointment.
Each year, the centre shall draw up budget and management proposals, and also a financial and operating plan for the following four years. The centre’;;s operational expenses shall be met by the Treasury and by its independent earnings.
The Minister of Social Affairs may, after receiving proposals from the director of the centre, issue a scale of charges to meet expenses in connection with educational courses, the publication of educational materials and professional assistance and consultation provided to the parties collaborating with the centre (cf. items 5, 7 and 9 of the first paragraph of Article 4).
Subject to special contracts and in return for payment, the State Diagnostic and Counselling Centre may undertake to provide primary schools’;; specialist services (cf. Article 2 of the Regulation on primary schools’;; specialist services, No. 386/1996) and pre-schools’;; counselling and psychological services (cf. Article 16 of the Pre-Schools’;; Act, No. 78/1994).
Staff of the State Diagnostic and Counselling Centre shall be under an obligation not to disclose matters of which they become aware in the course of their work and which have a bearing on the lawful private interests of the centre’;;s clients or those of their relatives. This non-disclosure obligation shall remain in force even after they leave the centre.
The provisions of the Patients’;; Rights Act and the Health-Service Employees’;; Act, as appropriate, shall apply regarding other aspects of confidentiality, non-disclosure obligations, the preservation of personal data, the giving of information and the release of materials. Provisions of the Children’;;s Act and the Child Protection Act shall also apply regarding the obligation to provide information and the release of materials.
Follow-up measures proceed after diagnosis. Follow-up measures shall normally be carried out by the regional offices for handicapped persons’;; affairs or by those local authorities that have taken over the provision of services for the handicapped, the primary schools’;; specialist services, the pre-schools’;; counselling and psychological services and other specialists, as appropriate.
However, the State Diagnostic and Counselling Centre shall handle long-term follow-up measures and counselling in the case of individuals who have unusually complex or rare handicaps or developmental disorders and problems of a special nature relating to their handicaps.
If employees of the State Diagnostic and Counselling Centre become aware that an individual is not receiving satisfactory services, they shall be obliged to alert the director of the centre. He may, following consultation with the handicapped person or his legal guardians, send a written communication on the matter to the appropriate regional council for handicapped persons’;; affairs. In such cases, he shall also send a copy of the letter to the appropriate representative of the handicapped and to the regional office or the local authority that has taken over the provision of services for the handicapped.
Issue of regulations. Commencement.
The Minister of Social Affairs may issue regulations on the application of this Act in further detail, particularly as regards collaboration between the State Diagnostic and Counselling Centre and other parties (cf. the third paragraph of Article 4) and as regards special contracts with local authorities (cf. the fourth paragraph of Article 6).
This Act shall take effect on 1 June 2003. As of the same date, Article 16 of the Handicapped Persons’;; Act, No. 59/1992, shall stand repealed.
This Act shall be reviewed within four years of its commencement. The review shall be complete by 1 June 2007.