Pearse Doherty (Donegal South West, Sinn Fein) | Oireachtas source

I have chosen to raise this issue with the Minister of State as it is very emotive and poignant for many people throughout the State. The Health Act 1970 acknowledges the moral imperative of the health services to make arrangements for the supply without charge of drugs, medicines and medical and surgical appliances to people suffering from prescribed diseases and disabilities of a long-term nature, in effect establishing the HSE administered long-term illness scheme.

There is no doubt that this scheme is of monumental benefit to the thousands of people who depend on it to cover the costs, which would otherwise be onerous, associated with treating their individual medical conditions. However, one aspect of the terminology used in the existing legislation that specifies the qualifying conditions for accession to the long-term illness scheme is contentious, perturbing and for many people stigmatic. The legislation in question is the Health Services (Amendment) Regulations 1971, which prescribe diseases and conditions for the purposes of section 59(3) of the Health Act 1970. The regulations list serious and often life-limiting conditions, including phenylketonuria, cystic fibrosis, spina bifida, hydrocephalus; haemophilia and cerebral palsy.

One condition stipulated in the regulations, but which I have yet to mention, stands out for many people. Under the regulations, "mental handicap" is the tag used to encapsulate conditions such as Down's syndrome and global developmental delay. This archaic, offensive and hurtful label has caused untold emotional suffering to those affected by these conditions and their families for many years. It is a tag that has no place in the world in which we now live. I raised this issue with the Minister of State, Deputy Kathleen Lynch, earlier this month. I asked her in a parliamentary question whether her attention had been drawn to the offensive nature of this terminology and whether had she any plans to review and amend the secondary legislation by which this term is shamefully legitimised. Even though I comprehensively illustrated the derogatory and insidious nature of the label, together with the negative connotations with which it has become associated, she unfortunately responded by telling me she had no plans to amend the terminology used to denote the conditions covered by the long-term illness scheme.

As I was not satisfied with the response I received, I chose to highlight this issue again by asking a question that was referred to the HSE for direct response. In its reply, the HSE professed that with regards to the long-term illness scheme, it no longer employs the term "mental handicap", which dates back to the 1970s. It said that it opts to use what it described as "the correct term" of "intellectual disability" instead. The HSE also gave me a commitment that it would review the wording of the long-term illness scheme on its website to reflect this development. I think we were all delighted to hear of the HSE's decision to drop a label which can only be described as a sordid and unmissed relic of the past. While the simple and sensible action taken by the HSE might involve no more than the rewording of existing HSE documents, the importance and significance of this move should not be overlooked. It was a momentous victory for disability rights advocates throughout Ireland, for those who rightly refuse to be ill-defined by their disabilities and for those who dedicate their lives to challenging the perceptions and preconceived judgments of others regarding intellectual disability.

I call on the Minister to amend the Health Services (Amendment) Regulations 1971 so that this obsolete, draconian and deeply insensitive term can finally be removed from Irish statutes once and for all. This would end the shameful practices of the past, which merely served to stigmatise and marginalise further those who suffer from intellectual disabilities. It would afford them the fairness, dignity and respect they thoroughly deserve. These are our children, friends and loved ones. We should cherish them equally and we should amend the regulation.

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