Ms Sarah Lennon:

I propose to talk about delay, readiness and what can be done in the meantime. The delay is sending a message. Recently, the Minister of State with responsibility for disabilities said that notwithstanding the fact that we have not ratified the convention, life is still better for people with disabilities in Ireland than in many countries that have ratified it. The answer to that is to call on him to prove it. Let us consider the globe. Here is the list of countries: Bhutan, Cameroon, Chad, Fiji, Kurdistan, Lebanon, Libya, Monaco, Solomon Islands, Saint Lucia, Tonga, USA, Uzbekistan and Ireland. That is it. Everyone else has ratified the convention. They are sending a different message from the message Ireland is sending.

We are contradicting ourselves in terms of our readiness. We have taken a decade to get to the point where we have now clearly signalled our intent to ratify the convention with what we call declarations and reservations. We are not going to ratify the convention entirely anyway. We could have done that a decade ago. We could have put in declarations and reservations ten years ago while getting on with the ratification of the convention in the meantime.

Last week, we had the pleasure of receiving a delegate from Malta at Inclusion Ireland. Rhoda Garland was her name. She works with a disabled persons organisation in Malta. She spoke about the experience of the Maltese. She said that before ratification many people with disabilities did not have a good experience but that ratification had kick-started considerable progress. Malta ratified first and started reforming laws and legislation after that. At that stage Malta had a framework within which to work. The country sought guidance and expertise from other countries about their experiences. She spoke with our self-advocates in Inclusion Ireland. They asked whether they should write to the Minister to suggest that Ireland should ratify the convention. She said "No", but continued that they should write to the Minister and insist that we ratify it. That was a useful way to look at it.

I mentioned that we are going to put in a reservation. This lends itself to the question around the accessibility policy and whether we are ready for it. It is our intention – we have said as much clearly – to put in a reservation relating to reasonable accommodation. In essence, we are going to have different levels of reasonable accommodation depending on who we are talking about. Public employers, for example, providers of public services have a certain standard that applies. This is called the disproportionate burden. However, there is a nominal cost for private services. In essence, it depends on who a person is or what service the person is receiving. If it is a public service, a person will be accommodated to a certain level. However, if it is a private service, the service level will be different. That is not consistent with the UN convention and that is not the experience in most other countries.

We have said it is a constitutional barrier.

Something Inclusion Ireland has sought, and it would be fantastic if this committee could do it, is the publication of the legal advice which says there is a constitutional barrier to that. If there is a constitutional barrier, we should examine ways around it. We are probably tired of referendums but if something could be put in place, such as a funding scheme, to allow private services to reach the higher standard without impeding their private property rights, it would be a practical thing to do in the meantime and would not cost a great deal of money.

Another thing we could do in the interim is borrow from the Maltese model. Malta invested in self-advocacy. It trained self-advocates and worked with people with lived experience of disability. Malta has employed the model that we are proposing, where people with disabilities are involved in the monitoring. Once the convention was ratified those self-advocates were ready to begin the monitoring aspect. That is a practical thing we can do ahead of ratification.

I was asked a specific question about health screening. We can do several things. Obviously, alternative formats that are easy to read and using videos and Braille are important. Another practical course would be for the Minister for Health to publish a public sector duty obligation, that is, what the Department of Health intends to do and setting out a plan for all of the health screenings and health services and what alternative formats the Minister would like his Department to employ. That is something he is required to do under the Irish human rights and equality Act.

A study was carried out in 2009 on screening for breast cancer in post-menopausal women. That study found that one four people in the sample did not receive breast screening. They were invited and a number of them attended. Of those who did attend, 16% could not be screened for various reasons including fear, discomfort, distress and what was described as an inability to co-operate. The study was putting the blame a little on the participants rather than, perhaps, on the process. One issue that emerged strongly was consent to the treatment. Again, the issue of consent is huge while the Assisted Decision-Making (Capacity) Act is not in place. That study found that people with more profound intellectual disabilities were no less likely to develop breast cancer but were less likely to receive the screening. It is an irresistible mandate for us to fully commence the Assisted Decision-Making (Capacity) Act without further delay.

In terms of there being no new rights under the convention, we work a great deal with self-advocates and they are not looking for new rights. They are looking for the same as everybody else - a job, a family, a roof over their heads and to belong. They come up against unique barriers. People with disabilities do not need new rights, but they need us to respond to their unique barriers. At present, without ratifying the convention we are letting them down.