Fighting for a Service: Rights of the Disabled

Baribre Redmond

Issue 377, vol.95, Spring 2006

The 1994 0’Donoghue Case accorded the right of formal education to children with severe or profound intellectual disability.

The second phase of the 2005 0’Carolan Case awarded damages to the family of a severely autistic boy, who had kept him at home rather than accept services deemed inadequate.

The 2000 High Court Sinnott Case saw Kathy Sinnott’s claim on behalf of her autistic son, Jamie, acceded to in full. A home-based one-to-one educational service was put in place. Being experimental – based on Applied Behavioural Analysis, and involving parent specialised training – this was costly. A 2001 Supreme Court Case followed, where it was decided that there was no obligation on the State to provide primary education beyond the age of 18.

The 2001 Disabilities Bill was introduced in order to bring legislation up to date. It was withdrawn following an outcry - as not being rights-based, and as denying recourse to the Courts. The 2004 Disability Bill (becoming law in 2005) admitted the right of any person with disability to have their service-need assessed independently (a procedure which would generate a “Service Statement”), taking into account “the practicability of providing the service and the financial resources available”. The person could have the Service Statement reconsidered – but not in the Courts (a prohibition criticised by the Irish Human Rights Commission).

There would seem to be a continuing dominance of the “expert” psycho-medical model in service provision, and a lack of dialogue between service user and ( ? penny-pinching) service provider. The need is greater than ever to have the family on board as full partners in the discussion.

Not only do parents have concerns about the quality and dependability of care in their own lifetime, but particularly afterwards – “care” extending all the way to education and to eventual stimulating and rewarding occupation.

Bairbre Redmond is Vice-Principal, College of Human Sciences, University College, Dublin 4