Disability group left to 'kick and scream' for basic services
A GROUP representing people affected with a rare neurological disorder has spoken of its frustration at having to "fight, kick and scream" for access to basic services to help their loved ones.
And Rett Syndrome Ireland last night said members were fearful that December's Budget could slash what few services were already in place.
Chairman Andrew Kehoe said families were "holding their breaths" that the Government would not cut more special needs assistants, adding that many families did not have access to physiotherapists and speech and occupational therapists.
Rett syndrome is a rare neurodevelopmental disorder resulting in physical and intellectual disability. It affects girls almost exclusively, and about three new cases a year are diagnosed.
It is characterised by normal early development followed a period of regression where skills such as hand control and speech can be lost. Everyone affected is severely and multiply disabled.
Speaking at an annual family day in Roscrea, Co Tipperary, Mr Kehoe said where you lived dictated whether you had access to services.
"The purpose is for families to meet and compare notes with other people in a similar situation," Mr Kehoe said.
"Not all the girls are affected the same. Without hand function there's little they can do. Most watch television or listen to music. Some with slight hand movements can use a joystick to interact with a computer.
"Lifelong learning is probably possible but unfortunately there's no facilities. Even at the height of the boom, the services weren't adequate," he said.
"We had to take a case against the Department of Education to get services. Everybody should be entitled to services wherever they live, but it's all pot luck."