Dáil Éireann Debate, Tuesday - 26 November 2013
627. Deputy Michael Healy-Rae asked the Minister for Health if he will take responsibility for children who are suffering from narcolepsy following receiving the flu injection; if he will put supports in place to help these children with educational difficulties throughout their lives; and if he will make a statement on the matter. [50539/13]
View answerThere are a number of supports in place for persons diagnosed with narcolepsy following pandemic vaccination. Both the Health Service Executive and the Department of Education and Skills are ensuring that those affected receive tailored assistance to address their individual needs.
The health supports include clinical care pathways to ensure access to rapid diagnosis and treatment, multi-disciplinary assessments led by clinical experts, counselling services for both the individuals and their families, discretionary medical cards for those who have been diagnosed have been provided to allow unlimited access to GP care and any prescribed medication, ex-gratia reimbursement of vouched expenses incurred in the process of 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 to provide advice, information and access to local services.
On the education side, the National Educational Psychological Services (NEPS) 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 rest breaks were provided for students who sat state exams in last June. Similar arrangements will be available on a needs basis to students sitting state exams in future years. The Department of Education and Skills issued circulars providing information to schools on the nature, likely symptoms, possible effect of the condition of narcolepsy on students and the supports available for students.
With regard to third level, students diagnosed with narcolepsy following pandemic vaccination can access the Disability Access Route to Education (DARE) scheme, which is a college/university scheme which offers enhanced access routes to third level education for pupils with special needs.
The HSE Advocacy Unit is in regular contact with individuals affected and regularly meet representatives of the SOUND (sufferers of unique narcolepsy disorder), the last meeting was held in August 2013. I have also met with representatives of SOUND on two occasions to discuss their needs. Furthermore the Chief Medical Officer and officials from my Department, the HSE and the Department of Education and Skills have met with SOUND a number of times, including yesterday to address issues of concern.
All health and educational services and supports are provided on a needs basis and are reassessed on an on-going basis to take account of changes in the individuals condition and circumstances.
