A diagnosis in medicine is a medical decision about the nature of a disease and the patient’s condition. A diagnosis is essential in medical practice for determining appropriate treatment, planning further examinations and establishing a prognosis.

For legal purposes, a disability is defined as the loss of or an abnormality in an anatomical, physiological or psychological structure or function of a person which in conjunction with different relational and environmental restrictions prevents participation in social life on equal bases with the others. Simply put, a disability in children is reflected in how much more support and assistance they require from adults compared to their healthy peers.

A special need is not the same as a disability; it is a broader concept than a disability. A special need may be developmental or acquired. For example, in cases of educational special needs, a child requires adjustments to the organisation of learning and assistance from educational support specialists and/or the local government. In the context of education, a special need may also include talent.

For children, the terms ‘special needs’ and ‘disability’ are often used together. It is important to remember that a disability is always associated with a special need, whereas a special need does not necessarily mean a disability.

To understand the diagnosis and the associated treatment journey, ask the physician:

• what examinations and procedures will my child undergo?
• what medications will my child need to take?
• will my child need to stay in the hospital all the time now?
• how often will we need to visit the physician in the future?
• am I required to pay for the treatment?
• what are the risks associated with this diagnosis and treatment?

Rare diseases are characterised by very low prevalence. At the EU level, a rare disease is defined as a disease affecting up to 5 out of 10,000 people. Rare diseases can manifest during the early postnatal period, childhood or adulthood. Diagnosing a rare disease can be challenging, as it often requires complex diagnostics that may not be available everywhere. In Estonia, the diagnosis, monitoring and treatment of rare diseases is carried out by the Competence Centre for Rare Diseases at the University of Tartu Hospital.

Tervisekassa
Ministry of Social Affairs
Social Insurance Board

Estonian Chamber of Disabled People – Handbook ‘Teekond erilise lapse kõrval’
Social Insurance Board - Who can help and where to turn to when a child needs more support?
UT Hospital – Competence Centre for Rare Diseases – What is a rare disease?