Independent MEP Marian Harkin said it is “absolutely essential that there are no further cutbacks in either respite care provisions or other support services for Carers and sufferers of Retts Syndrome.”
In a statement to the Leitrim Observer, Ms Harkin noted that “those who suffer from Retts Syndrome experience profound and multiple disabilities. Their illness brings with it chronic ill-health and sufferers are completely dependent on others for their care. When we speak of 24/7 care, then we are most certainly describing caring for those with Retts Syndrome”.
According to the Ireland North & West MEP, this was why she endorsed the call from the Retts Syndrome Association of Ireland for “more cost effective, humane and respectful care that Retts Syndrome sufferers and their parents deserve”.
Ms Harkin added that “one of the issues raised by the Association was the need to ratify the UN Convention on Rights of Persons with Disabilities - a call I have been making for a number of years. I have written to Ministers, put down questions and raised the issue in the European Parliament. I did so because the ratification of this Convention will be a step in the right direction for all persons with a disability.
“A further matter of real concern is the immediate need for the Health Information and Quality Authority (HIQA) to implement the standards introduced in 2009 for all publicly funded residential facilities in Ireland for children and adults with disabilities. Despite being a very vulnerable group there are no inspections on these facilities. This can be dealt with immediately and we have a response to ensure that vulnerable, disabled persons enjoy the same standard of care as others,” she concluded.