Pearse Doherty (Donegal South West, Sinn Fein)
Link to this: Individually | In context | 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.

Kathleen Lynch (Cork North Central, Labour)
Link to this: Individually | In context | Oireachtas source

I thank the Deputy for raising this issue. I have continually spoken about the use of inappropriate language and highlighted the need to change our language when the circumstances are correct. I will continue to do so long after my career in politics ends. Therefore, I agree with everything the Deputy has said.

The Health Services (Amendment) Regulations 1971 use the term "mental handicap". This old-fashioned term is no longer in general usage. It is not an appropriate term to be used nowadays as it offends many people. The contemporary term used in this country now, including by the Department of Health and the HSE, is "intellectual disability". As the Deputy has rightly said, this term is far more significant than anything that he and I, and maybe others in this House, might find when we look through Acts that were commenced over 30 years ago. Indeed, he will appreciate that these regulations were made over four decades ago - in September 1971 - by the then Minister for Health, Erskine Childers, who later became President of Ireland. While it might seem baffling now, it appears that the use of the term "mental handicap" was considered appropriate at that time. I understand that the representative body, Inclusion Ireland, used to be named the National Association for the Mentally Handicapped of Ireland. I recall the change of name, which happened relatively recently.

I do not believe a person like Erskine Childers would have meant to cause any offence in the making of regulations in 1971, which is a long time ago. Some Deputies in this House were not even born at that stage. With the passage of years, the language used from previous times can appear offensive and inappropriate, even if it was not so in those days. As I have said, "intellectual disability" is the commonly used term in this country now. I agree with the Deputy's view on the term "mental handicap", which is completely old-fashioned and offends many people, especially self-advocates. As the Deputy may be aware, there are other terms used to describe "intellectual disability". However, "intellectual disability" is the most commonly used term internationally and is widely used in medical and teaching circles in Ireland. For example, there is a nursing degree in intellectual disability nursing. There is also a National Institute for Intellectual Disability.

The Department of Health used to have separate units for mental handicap and physical disabilities, but they were merged over ten years ago. Now that the Department adopts a non-diagnosis-specific approach to disabilities, its policies apply to people with all disabilities. It uses the definition of "disability" set out in the Disability Act 2005, which is a far more relevant Act than the 1970 Act. The 2005 Act describes disability in terms of its effects on the individual, rather than in terms of particular types of disability. The national disability strategy and the UN Convention on the Rights of Persons with Disabilities take the same approach.

I agree that the terminology used in the 1971 regulations is old-fashioned and offends many people. I think it would be best for acceptable contemporary terminology to be substituted for old-fashioned language when legislation is being revised. I am about to run out of time. We might be able to deal with this matter further in the supplementary part of this debate. I remind the Deputy that a far more impactful Bill, the Assisted Decision-Making (Capacity) Bill 2013, will come before an Oireachtas committee in May. If I were asked to prioritise legislation, I would say that the Bill in question will have a far more profound effect on our lives as we age. I refer to the lives of those who were born with a disability and those who will acquire a disability during our lifetimes. The Bill in question will change fundamentally how we think and amend all the relevant legislation that has gone before it.

Pearse Doherty (Donegal South West, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I am well aware of the Assisted Decision-Making (Capacity) Bill 2013 and the delays with it. I know families who have been campaigning for it and are frustrated by the delays in bringing it forward. The Minister of State's concluding comments could be interpreted as making a judgment on which rights we will provide for in the first instance. I would say out of respect that I know the Minister of State did not mean that. The Assisted Decision-Making (Capacity) Bill 2013 will have major effects. There are family members out there who have told me they were in tears as they filled in the form for long-term illness care because they had to label their child with "mental handicap". Other people told me they decided not to avail of the scheme because they refused to have their child labelled with "mental handicap".

This is not the Ireland of 1971; it is the Ireland of today. The Minister of State's remarks suggested that the use of this term was confined to the time of Erskine Childers. If she visits the HSE website today, she will see the list of conditions that have to be fulfilled by people in order to qualify for the long-term illness scheme. Those conditions include "mental handicap". The Minister of State can download the form from the HSE website.

I checked it again today and the term "mental handicap" is still on the form. According to the Minister of State, the contemporary term to be used is “intellectual disability” but it is not on this form. I am sure also that she and the rest of us use that term in everyday life. However, it is used in officialdom in this form and on the website. I accept the Health Service Executive has said it will change the form but it still has not happened.

One can change the form for the new language but the Act still states mental handicap is a qualifying condition for the long-term illness scheme. Most regulations can be changed at the stroke of a pen and ministerial order. Is it possible these terms can be changed in the Health Services (Amendment) Regulations 1971? This label is deeply offensive and hurtful. We are both on the same page that this should not exist. As the HSE can deal with it, can the Minister of State deal with it in the original legislation?

Kathleen Lynch (Cork North Central, Labour)
Link to this: Individually | In context | Oireachtas source

There has been no delay in the Assisted Decision-Making (Capacity) Bill 2013. I accept there has been a 20 year actual delay in publishing it. The Government, however, has drafted relevant legislation and sent it out for the most widespread consultation there has been. This has involved not just the organisations but individuals and academics internationally. There has been no delay on our part. We are determined to get this legislation right because it will have a greater impact on people’s lives. It will not just affect those with intellectual disabilities but people with Alzheimer’s and dementia. It will be about an individual’s will and preference as they go through life. I do not accept the Deputy’s concern about the delay in the legislation. There is no delay in it and Committee Stage will be taken in May.

If the change to the regulations could be done at the stroke of a pen, it will be done. The commonly used term is “intellectual disability”. When I speak to parents or children at a passing out from second level education or the move from first to second, I do not use the term at all. We need to start looking at them as people who have a difficulty that we need to support. The type of label such as “intellectual disability” should not necessarily be used and most parents appreciate that too. If the change to the regulations can be done through ministerial order, then it will be done. There is, however, forthcoming legislation such as the Assisted Decision-Making (Capacity) Bill 2013 which will have a greater impact and take more time to bed down. I am determined to get it right as it will have a greater impact than previous legislation in this area. The Disability Act may have to be changed, as the Mental Health Act has already been amended to take account of the Assisted Decision-Making (Capacity) Bill 2013. I accept we are all speaking from the same page. Unless one is standing in the shoes of a person affected by this issue, one cannot empathise to the extent one would wish.