Wednesday 21 March 2018

Support and services available to sufferers

The HSE and the Department of Education and Skills provide a range of services and supports to people diagnosed with narcolepsy following pandemic vaccination, regardless of age on an ex-gratia basis.

However, the department says, treatment and individual medical needs may need to be re-assessed over time to take account of any possible changes in their condition or circumstances.

The ex-gratia health supports include access to rapid diagnosis and treatment, multi-disciplinary assessments led by clinical experts, counselling services for both the individuals and their families and discretionary medical cards for those who have been diagnosed with the condition.

There is also ex-gratia reimbursement of vouched expenses incurred in the process of a patient's diagnosis and treatment, including travel expenses for attending medical appointments, physiotherapy, occupational therapy assessments, dental assessments and dietary services all on a needs basis.

Regional co-ordinators have been appointed to assist individuals in the form of providing advice, information and better access to local services.

The Department said the National Educational Psychological Services (NEPS) is engaged with all of the schools being attended by children with narcolepsy, to provide guidance and assistance on the condition and the supports available.

These include special-education home tuition, the provision of supplemental learning support/resource teaching support on a needs basis and the provision of Special Needs Assistants (SNA) support if required.

Furthermore, "reasonable accommodations", including special examination centres and regular rest breaks, were provided for students suffering from narcolepsy who sat State exams last June.

Similar arrangements will be available on a needs basis to students sitting State exams in future years.

With regard to third level, students who have been diagnosed with narcolepsy following pandemic vaccination can access the Disability Access Route to Education (DARE) scheme, which is a college/university programme that offers enhanced access routes to third-level education.

All health and educational services and supports will continue to be provided on an ex-gratia basis.

Those services and supports will be reassessed on an ongoing basis to take account of the individual's condition and circumstances.

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