Brian Hayes (Dublin South West, Fine Gael) | Oireachtas source

I thank Deputy Ó Fearghaíl for raising this and for providing me with the opportunity, on behalf of the Minister for Health and Children, to outline to the House the importance of the issue raised.

The Minister's priority is to ensure that the children and adolescents affected are provided with services and supports to meet their health and medical needs. The Department is working closely with the Health Service Executive and the Department of Education and Skills to address the needs of those affected by narcolepsy following Pandemrix vaccination. The Department is engaged with the support group SOUND, which represents those affected. Meetings have been held by the Minister, Deputy Reilly, and his Department with representatives of SOUND.

The HSE provides a wide range of services and supports to those affected, including access to rapid diagnosis, clear treatment pathways, temporary medical cards and reimbursement of expenses incurred. Multidisciplinary assessments, which allow for appropriate individualised health and educational supports to be put in place, have commenced. The National Educational Psychological Service, NEPS, is also engaging with the HSE and with the individual schools and parents of children concerned to identify and provide educational supports for the children and adolescents affected.

The Department of Education and Skills has held a number of meetings with SOUND to outline the range of educational supports that may be provided for children with narcolepsy, subject to an assessment of their needs. These supports can include special arrangements at State exams, access to special needs assistant support, additional learning assistance in schools, information for schools regarding this condition and home tuition support for children who have missed a significant amount of time in school due to illness.

A meeting was held recently between SOUND and representatives from the Higher Education Authority national access office and the Department of Education and Skills higher education unit on the issue of assistance that may be made available for young adults with narcolepsy in third level education. Students with narcolepsy may access the disability access route to education, DARE, scheme, which offers enhanced access routes to third level education for pupils with disabilities. Support may also be provided to pupils in colleges through the disability officers at third level colleges. The association for higher education access and disability, AHEAD, group, which works to promote full access to and participation in further and higher education for students with disabilities and to enhance their employment prospects on graduation, will also provide assistance to SOUND on these matters.

The Department of Health is considering all possible supports that may need to be put in place for those affected. Any such supports require the Minister's approval and the consent of the Minister for Public Expenditure and Reform. I assure the House that this matter continues to be a priority for the Minister and the Department of Health.

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