State to provide teenager with rare metabolic disorder with weekly tuition
The State has agreed to provide 20 hours of tuition per week, and other educational services, to a teenaged girl suffering from a rare metabolic disorder. The girl has brain damage, brittle bones, high susceptibility to infection and is wheelchair bound. She has never attended school.
Suing through her father the girl took an action against the Minister for Education, the National Council for Special Education Ireland, the Attorney General and the HSE seeking an order from the court directing that the defendants provide her with appropriate education, support therapy and support services in accordance with her Constitutional rights. A declaration was also sought that the failure to provide such services was in breach of her Constitutional rights.
Settlement was reached between the sides in respect of her educational needs but the case against the HSE has been adjourned until next month because the family rejected the HSE's offer of care as inadequate. The court heard that the girl requires 24-hour care but the HSE said it made the best offer it could in the current climate and it hoped that additional funding could be available in the near future.