Skip to main content
Normal View

Dáil Éireann debate -
Wednesday, 22 Feb 2017

Vol. 940 No. 1

Disability (Miscellaneous Provisions) Bill 2016: Second Stage (Resumed)

Question again proposed: "That the Bill be now read a Second Time."

When we last discussed the Bill I was posing a series of questions on the preparation and implementation of the UN convention to the Minister of State, Deputy Finian McGrath. I will add a couple of other issues to that. Will he outline in his response if there has been any formal structured consultation process with civil society, and specifically with people with disabilities, since the publication of the roadmap to ratification of the UN Convention on the Rights of Persons with Disabilities in October 2015 to inform the Bill? We were supplied with documents from the likes of the Irish Human Rights and Equality Commission with observations on the general scheme of the Bill. The Minister of State might remember that early in this Dáil we had a meeting of campaigners for disability rights in Dublin Bay North, organised by, among others, the great Mr. Martin Naughton, who sadly passed away subsequently. The Minister of State was not present that night but the issues arose around levels of consultation.

Given that the UN Office of the High Commissioner for Human Rights recommends placing "the focal point on the convention close to the heart of government, such as in the office of the president, the prime minister or the cabinet office," is the location of the focal point within the equality division of the Department of Justice and Equality too narrow? Would it not be better placed within the Department of the Taoiseach to ensure cross-departmental collaboration and leadership at Cabinet level. That case has been made for Brexit, for example. Article 33.3 of the convention sets out the requirement to involve people with disabilities in the monitoring process, with civil society in particular being involved, including persons with disabilities and representative organisations. As the Bill indicates, they shall be involved and participate fully in the process.

Will the Minister of State outline how people with lived experience will be resourced and facilitated to play a crucial role in monitoring the implementation of the convention in Ireland? Will the Minister of State outline how the Bill will make legislative provision to ensure people with lived experience are the key constituents in monitoring the UN convention in Ireland? Will he outline the advice his Department sought from the Attorney General with regard to reasonable accommodation and the ratification of the UN convention? Will that legal advice be published as this is an unusual Bill and the Minister of State indicated he would bring forward very significant matters in the additional amendments? Will the Minister of State outline if the Bill represents a full ratification of the UN convention and, if not, what reservations are proposed and why? I heard the Minister of State speak about that several times in the preceding and possibly earlier Dáileanna. Will he now put people's concerns to rest in that regard and tell us if other work must be done?

Article 141(b) of the convention clearly states that persons with disabilities should not be "deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty".

The absence of specific legislation on deprivation of liberty as part of the Bill is worrying. Given the seriousness of this equality and human rights issue, has the Minister of State engaged in any formal, structured discussion with civil society organisations, particularly those which are well versed in legal matters, regarding the deprivation of liberty? When will legislation be developed in conjunction with people with disabilities on the issue? What is the Minister of State's timetable for implementation?

It is a very important Bill and follows on from the Assisted Decision-Making (Capacity) Act 2015. During recent years, I have asked many parliamentary questions about when ratification will take place. As the Minister of State knows, approximately 600,000 of our fellow citizens have disabilities, approximately one in eight people. On 16 January, representatives of a number of disability charities launched the #RatifyCRPD campaign. This included people from the Rehab Group, the Irish Wheelchair Association, the Alzheimer Society of Ireland, Down Syndrome Ireland and the National Council for the Blind Ireland. Over the years, I have also made many representations on behalf of civil society organisations asking when our ratification will finally take place.

The Department of Justice and Equality set out a roadmap to ratification, which outlined the principles of the CRPD for which we needed to legislate. This included Article 3, general principles; Article 5, equality and non-discrimination; Article 12, equal recognition before the law; Article 13, access to justice; Article 14, liberty and security of the person; Article 15, freedom from torture or cruel, inhuman or degrading treatment or punishment; Article 23, respect for home and the family; Article 27, work and employment; Article 29, participation in political and public life; and Article 33, national implementation and monitoring. Those are some of the key headings. I warmly welcome the fact that Ireland is also signing up to and ratifying the optional protocol to the CRPD, which allows for complaints to be submitted to the CRPD.

The total budget for disability services is €1.654 billion this year, an increase of €92 million on the 2016 allocation. In late January, I received a reply from the Minister of State to a parliamentary question I asked about additional resources that will be deployed in disability services as a result of the increase. The reply stated the funding of €62 million was allocated on an ongoing basis to support the full-year cost of approved compliance work in voluntary and statutory service providers in respect of the national standards for residential services for children and adults with disabilities and emergency places which had commenced in 2015. Worryingly, the Minister of State's reply went on to state that in this context the key focus across the disability sector is on improving compliance with national residential standards as regulated by HIQA. He said there had been an overall steady increase in compliance with the most recent analysis of HIQA compliance for disability residential services indicating a national compliance rate of 66%. While this is welcome, it shows a huge gap which the Minister of State needs to address.

We recently saw coverage by "Prime Time" and other news organisations of facilities for our fellow citizens with disabilities in long-term residential care. Part of the responsibility for the deterioration in standards of the capital provision of the buildings and staff cuts must be laid at the door of the Minister of State, the Government, the preceding Government and the Fianna Fáil Government from 2009. There have been massive cuts and hard-pressed staff have been trying to do their best to look after more and more clients. The Minister of State knows this from his visits to these institutions.

Disability campaigners have been calling for this ratification since we signed the convention in March 2007, almost a decade ago. The delay was attributed, at times, to the fact that Ireland was a dualist state. However, we are the only EU member state not to have ratified the convention. The basic purpose, stated in Article 1, is to "promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity." It should be a fundamental value of any modern, democratic, egalitarian nation. For this reason, it is welcome that, at long last, we have reached this stage. I will be very interested to hear the Minister of State's response.

Ireland is the only remaining EU member state yet to ratify the UN Convention on the Rights of Persons with Disabilities. Ireland signed the convention on the Rights of Persons with Disabilities in 2007 and has since given repeated commitments to ratification, yet it has taken ten years to take into account the need to ensure all necessary legislative and administrative requirements under the convention have been met. The legislation as proposed is still incomplete and does not contain the complete text. The Irish ratification process has been painfully slow.

The purpose of the convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities in all areas of their lives and to promote respect for their inherent dignity. Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

It is welcome that the Government has introduced a Bill to allow us to proceed with ratification. Many people still see themselves as forced to live in inhumane conditions devoid of independence or opportunity to integrate into society. The Bill will strengthen the rights of people with disabilities to equality in the workplace, guarantee their equal legal capacity and ensure their equal participation in public and political life. The general scheme of the Bill is to address these legislative and administrative barriers to ratification. The purpose of the Bill is to amend a number of pieces of legislation so as to address these barriers. A number of other miscellaneous amendments are being made to equality and disability legislation, some of which will have to be made on Committee Stage, in particular the deprivation of liberty issues in head 3.

The omission of the text of these amendments limits the opportunity of many people affected to have an input into the legislative process. Will the Minister of State explain why this is the case? Ms Ann Marie Flanagan, a Clare activist on behalf of disabled persons, recently called on the Minister of State, Deputy Finian McGrath, to help end the degrading experience felt by people with disabilities across Ireland and to work closely with those who suffer with disabilities. People with disabilities are the experts. Why was consultation with disability representative groups not engaged in prior to the preparation of the Bill?

That is not true. It is a lie. It is not true at all.

The explanatory memorandum of the Bill states “legislative clarity” is needed on residential care facilities. Who has the statutory responsibility for making a decision that a patient should not leave residential care for health and safety reasons and what appeals should be in place to give legal clarity to it? The convention represents a substantial shift from the medical model to a rights based social model. This involves a move away from regarding people with disabilities as persons who require assistance due to their impairments towards regarding them as holders of rights who are entitled to social integration, under the social model. A clear indication of how people with disabilities live their lives is highlighted by the fact that events to celebrate international day of persons with disabilities had to be held on a Friday rather than on a Saturday last December, given that no accessible transport would be available on the Saturday, according to Martin Tobin of Clare Leader Forum.

The Irish Human Rights and Equality Commission, IHREC, and Inclusion Ireland are concerned that the Government does not propose to implement the convention’s requirements that reasonable accommodation be provided to persons with disabilities in all spheres of society. IHREC recommends we move away from institutional care, that preferably community based care should be provided with adequate funding and that this should be underpinned by legislation. Member states are obliged to take all reasonable steps to ensure reasonable accommodation is provided to persons with disabilities. This is something about which I feel strongly and would fully endorse. Will the Minister of State give the reasons for not implementing this requirement regarding accommodation?

The IHREC welcomes the proposed promotion, protection and monitoring in the Bill, which is to be overseen by IHREC. Will the Government facilitate persons with disabilities monitoring implementation of the convention?

The commission also recommends the absolute prohibition of detention of persons with disabilities, and this is absolutely correct. The commission and Inclusion Ireland recommend that persons with a disability should not be discriminated against in any manner and, for instance, should have access to voting and to sitting on a jury, provided the person possess the decision-making capacity to exercise these rights.

Inclusion Ireland would prefer that the advisory committee to the Irish Human Rights and Equality Commission would be made up entirely with persons with disability or a family member, rather than just made up of 50%. Inclusion Ireland also regrets that there was no public consultation on any aspect of the new legislation. Inclusion Ireland recommends that rather than the Department of Justice and Equality having responsibility for implementing the Convention, responsibility would be placed in the Department of the Taoiseach. This would ensure that the implementation would have cross-departmental focus. In supporting the Bill I regret the unacceptable delay of ten years, from the time Ireland signed the Convention on the Rights of Persons with Disabilities to this move to start the ratification process. I believe the Bill can be improved in several ways and I encourage the Minister of State, Deputy Finian McGrath, to take the views of all stakeholders and the views of those with disabilities into account as soon as possible while progressing the Bill through the Houses of the Oireachtas.

Before Deputy Michael Healy-Rae commences, I remind the House that when Deputy Michael Harty was making his contribution the Minister of State, Deputy Finian McGrath, used the word "lie" in an interjection.

I ask the Minister of State to withdraw it.

I apologise, but I did not realise I had said that word.

You are so used to telling it.

The record will show. The Minister of State has withdrawn it.

I thought I said "Not true", but I apologise.

If the Minister of State did, I will apologise to him, when I find out.

There is no panic. If I did say it, I totally apologise.

Are we getting into injury time?

We will give the Deputy some injury time.

To be fair to everybody, my recollection is that the Minister of State said "Not true".

We will move on but I want the record to be right.

I believe the Deputy is right, the Minister of State said "Not true".

Hold on, I will decide-----

I would not say that to Deputy Michael Harty in a million years.

No, I do not think you would. Possibly, I have been wrongly advised. I apologise to the Minister of State.

There is no panic at all.

I welcome the introduction of this Bill. It is very important. I want to raise a couple of items. I thank the Minister of State for coming to County Kerry recently. His trip was well received and I appreciated it even though he and I, personally, have differing views on congregated settings. We are men enough to appreciate each other's positions. I thank him very much on behalf of all the people in Saint Mary of the Angels for taking time out of his busy schedule to go there. I want to acknowledge in the House that his trip was welcomed by everybody.

I want to use the few minutes I have to put on the record of the Dáil, and I am grateful for the work the Minister of State is doing in trying to set it right, that in County Kerry, families of people with a disability, and especially children with a disability, need respite care provision. In County Kerry there is crisis in respite care provision. At a public meeting, a lady who had a child with special needs spoke out and said a shocking and horrifying thing. She said: "I hope to God that my child will die before me". I will not identify the person, but she felt that she needed to say it as she did not want to leave her child behind. This lady believed that the services are not being provided and she wanted to see that her child would be gone out of this world before she was. That is a shocking thing for anyone to have to say. I publicly stated at that meeting, and I shall do so again on the record of the House, that I would come back to Dublin, go to the Minister of State and tell him this story. I know he is aware of it and he assured me that he would do his best with the people in his Department to try and put it right. I beg him to provide the proper respite care services. I saw people at that meeting and could see from their faces that they are worn out. They have been driven down to the ground trying to take care of their loved ones without a break. I know the Minister of State will take this on board.

I hope the Leas-Cheann Comhairle will allow me the indulgence to say this in that there has been breaking news in the last couple of hours. The Alpha One Foundation was disappointed to learn this evening from the Minister for Health, Deputy Simon Harris, that the Government would not be entering into negotiations to agree a reasonable compromise on the price for Repreeza. I raised the issue last week with the Taoiseach. People are suffering from an illness and they need this drug. It is expensive but the foundation is at a loss as to how the Minister for Health cannot recognise the clear benefits of this drug therapy as evidenced by the patients who have been receiving it for over a decade. The Alpha One Foundation welcomes the decision, however, of CSL Behring - notwithstanding the Minister's stated position - that it will provide the therapy for an additional two months to allow further discussions to take place.

Let us be clear that these are people who have a very debilitating illness affecting their lungs. Twenty people are availing of this therapy. I admit that it is expensive but if they do not have the therapy they will die. This information only came out this evening and with the Minister of State here, I wanted to put it on the record. I know he will relay it, in his own good time, to the Minister for Health. It is so important for those 20 people. As I have said, their lives are as good as my life, the Minister of State's life or that of anybody else. Money should not come into it. Of course we must be prudent with taxpayers' money and the Minister for Health has to get the best deal possible from the drug companies. I respect that the companies also must make their money but surely to God, on compassionate grounds, some deal could be brought about between the HSE and the drug company on this very important issue.

I will now return to the Bill. Some people can say it is late in being introduced. I recall the day the Minister of State was in County Kerry. He said that he was disappointed it had not been brought before the House and that it had not been his fault. It is here now and we appreciate that it is now going through the House. Trying to do everything we can for people with a disability, trying to make their lives better, trying to ensure their safety and their rights and tying together all the legalities contained in this Bill, is very important work and we all have to put our shoulders to the wheel.

I will make way now for my colleague but my final word is on respite care with regard to people with a disability or special needs. At the public meeting in County Kerry, people's anger was not a cross type of anger. It was an upset anger about the lack of resources for taking care of these very special people. It is shocking. Many people with special needs were at the meeting and they realised the pressures this was putting on their families. I ask that the Minister of State does everything within his power to address this. At the meeting I said that if anybody would understand the issue, take it on board and try to ensure we had adequate funding for County Kerry, the Minister of State would try to. I ask that he please deliver on that because I told them I would do my best. I am pleading with the Minister of State on behalf of the people of County Kerry who need respite care beds for their children and I hope he will try his best to meet their needs.

I thank the Leas Cheann Comhairle. I believe he owes my colleague a couple of minutes injury time also.

We stopped the clock at the time.

You did not actually.

The Deputy is very vigilant.

I watched as a few minutes elapsed.

I also want to speak about the Alpha One Foundation and how concerned it is. It is a travesty that the Government would not continue negotiations. I compliment Senator Marc MacSharry who brought in some unfortunate family members and mothers of children suffering from cystic fibrosis. One powerful young woman testified that she lost her twin one year ago this week. Why is the Government so heartless with regard to cystic fibrosis and Orkambi? When the Minister of State, Deputy Finian McGrath, was in opposition - I was in opposition with him - he was up and down every day demanding and asking.

The Minister of State would not even attend the AV room, nor would any other Minister or Minister of State or show any bit of empathy, sympathy or understanding for those families.

The Disability (Miscellaneous Provisions) Bill 2016 is being introduced as part of a process by which the Government will ratify the UN Convention on the Rights of Persons with Disabilities. While I welcome the opportunity for a Dáil debate on any suggestion that will improve the rights of disabled persons, I also want to note the concerns around the UN convention that have been outlined in a document from the US Congressional Research Service, specifically the possible complications around abortion. Some critics worry that the term "sexual and reproductive health" in the UN convention could be a euphemism for abortion. It is important we have clarity on that. Some are concerned that the ratification of the UN convention may give Governments and not parents the right to make educational and treatment-related decisions for disabled children. These are serious concerns. I want to know if the convention has been scrutinised in light of our constitutional principles.

On a more local level, we note that while the UN convention may be ratified, questions remain about how we treat the disabled in this country. For example, I raised the issue of autism units on Leaders' Questions only a week ago. There are 12 children in a wonderful preschool unit at St. Mary's, Irishtown, Clonmel, but they have no primary school to go to in September, despite having a constitutional right to go to school. That is very worrying and the Minister of State needs to act. There are hundreds of such children across the country, not only in Tipperary. I note also the concerns outlined by Senator John Dolan, former CEO of the Disability Federation of Ireland, when he noted budget 2017 utterly failed to address issues facing disabled people. He said: "After nearly a decade of cutbacks and retrenchment, and into the fourth year from the end of the recession, this first budget statement of our new Government fails to address the significant daily issues facing disabled people all around the country."

When is the Minister of State going to introduce the mobility allowance he made so much noise about when he was in opposition? He met a lovely family from Tipperary with me, for which I thank him, but despite the promises, we are still waiting. This is affecting hundreds of families who are entitled to this allowance. They do not have taxis, the Luas or wheelchair accessible buses in Tipperary.

The Government is well aware that 600,000 people and their families are still being denied or being rationed access to basic services and supports. In the past decade people with disabilities and their families in all corners of this country have experienced and had to survive major and ongoing cuts to services and supports. I am bitterly disappointed the Government has deliberately chosen to take a populist approach when it could have made a strong start to rebuilding the social infrastructure to support those who have, and will have, disabilities in Ireland. This is unacceptable, especially as we have been given little hope that these issues will be addressed in future budgets.

There was a focus on disability but will the planned 21,000 housing units include appropriate accommodation for over 1,000 people with disabilities? I do not believe half of them will even be built. Where is the €30 million fund that was sought to improve the chronic situation for housing adaptation grants that we all need in our constituencies on a daily basis? Will the €497 million increase in health spending restore the €159 million cut from disability services during the recession? It will not, given the way the Government is wasting money on the children's hospital and given the overspending in hospitals throughout the country, the mismanagement and the outlaw behaviour of the HSE. All the Government can do is smile and say, "Carry on boys", and give them a pat on the back.

No funding was provided to meet the extra daily cost of living for disabled people although €20 per week was sought. The Minister of State should hang his head in shame. The €5 per week on disability payments simply keeps current parity with others. The preschool provision for children with disabilities will ensure they are not excluded from now on. I acknowledge the medical card coverage for all children on domiciliary care allowance, which will be a great relief to families. We all fought for that, no one more than the Minister of State, Deputy Finian McGrath, when he was on these benches. Where is it? What is the delay? They are still waiting but they do not have it. The intent was to "do something" rather than take the real opportunity to make a focused impact with the funding available for those with disabilities. Disabled people and their families do not just need measures to relieve pressure. They need measures to ensure they get out of the spiral of poverty and exclusion. This budget could have achieved that fairness and kick-started the economy but it does not do so, by any measure.

The effective way to support people most in need has been deliberately bypassed in this budget. Children, adults, families and older people in most need are those coping with disability and mental health. That has not been addressed in this budget. When resources are modest, they should be focused for most impact. Populism rather than public benefit has been the winner in the recent budget. The Minister of State is not too bad at that either. It is a shame he would not do this.

I remind the Minister of State that there is a long-established practice - in Tipperary anyway - that when Ministers come to visit, they inform all the Oireachtas Members. I am talking about his solo run last Friday with the king of spin and plamás when visiting two fabulous disabled centres in Cashel, Scoil Aonghusa and Scoil Chormaic. It was wrong to use people with special needs like that. There are photographs all over the newspapers of the Minister of State and my Tipperary colleague, Deputy Michael Lowry, with the Minister of State giggling and smirking, thinking "This is a great one up on McGrath and the others." Mattie McGrath does not care. The people of north Tipperary are the ones for whom I work - all the people across the board. I do not have to get the Minister of State down like a knight in shining armour, with his chest out, telling the people what Deputy Michael Lowry could do for disabled children. We all work hard - Deputies Jackie Cahill, Alan Kelly, Seamus Healy and me. Those kinds of acts have no place but this is the kind of Independent Alliance member he is. I have known the Minister of State for ten years so I know enough about him and I know the way he operates. The people deserve proper respect, including disabled people. The disabled children in Tipperary who attend those facilities deserve better, not sly actions and snide visits like that. When the Minister of State was extolling the virtues of one Deputy on radio, people saw it for what it was. I know the Minister of State has relatives in Tipperary. I hope they were not listening to the radio that day because, if they were, they would have been highly embarrassed.

The Minister of State should step up to the plate. He wanted the Ministry he was given. He has it and I know he has an interest in it. He has to deliver for these people. It is a shame he would not attend the briefing today. There is a Minister and four Ministers of State in the Department of Health, if not five, but none of them would attend the briefing on Orkambi. The Minister of State, Deputy Finian McGrath, needs to find his courage and conviction, if he can, and do something for the disabled.

The Deputy is a waffler.

I wish to share time with Deputy Joe Carey.

Is that agreed? Agreed.

I welcome the opportunity to speak on this important Bill. Like many Members from all sides of this House, I support the concept of an inclusive society and the need to remove all barriers that currently prevent people with disabilities from fully participating in society. I have no doubt this legislation will benefit not only those people affected by disability, but also society as a whole as we work towards a more inclusive and equal place for people to live and work in. I strongly believe people with disabilities should be afforded the same opportunities as every other member of society. There should be no barriers to those with disabilities fully participating in all aspects of society. For too long society has placed too many barriers in front of people with disabilities. There should be no barriers and this legislation will go some way to ensuring this.

The Disability Federation of Ireland recently reported that there were almost 600,000 people in Ireland living with a disability, which is 13% of the total population. Of people aged 15 years and over who have a disability, 21% were at work, which compares with 50% for the overall population aged 15 or over. Some 16% of people with disabilities aged 15 years to 49 have completed no education higher than primary level compared with 5% of the general population. It is quite clear from these statistics that not enough is being done to make our society more inclusive for those living with a disability.

The purpose of the Bill is to make progress towards Ireland ratifying the UN Convention on the Rights of Persons with Disabilities. The Bill, as published, will amend a number of existing acts including the Juries Act 1976, the Electoral Act 1992, the National Disability Authority Act 1999, the Equal Status Act 2000, the Disability Act 2005 and the Irish Human Rights and Equality Commission Act 2014. These amendments propose a number of changes including introducing a capacity test to see who can serve as a juror, and the Bill specifically provides that a deaf person will not be ineligible for jury service on the grounds that he or she requires a sign language interpreter. The prohibition of a person of unsound mind from standing for the Dáil will be repealed. It will be a function of the National Disability Authority, NDA, to provide information and advice to the Irish Human Rights and Equality Commission and staff members of the NDA will be civil servants. The amendments will also introduce a standard in regard to reasonable accommodation and a quota will now apply to Garda civilian staff.

While I welcome this legislation I am also concerned about some of the exclusions highlighted by other Deputies. The Irish Human Rights and Equality Commission has also raised these concerns and has requested the outstanding provisions be published without further delay, which will allow it to engage with the implications of the proposals for human rights and equality. It has also stated that in its opinion the number of provisions to be introduced on Committee Stage will significantly limit the potential for a detailed analysis. It made the point that in regard to deprivation of liberty, it might not be sufficient simply to introduce these measures on Committee Stage without a detailed analysis. I also understand that Inclusion Ireland has raised concerns in that regard.

We must ensure a thorough analysis is carried out so that any legislation passed ensures that the rights of people with disabilities are fully protected and enshrined in law.

Concerns have also been raised about the Title of the Bill and the fact that the word "equality" has been removed. I tend to agree with those who have concerns about that and support their call to have "equality" reintroduced to the Title of the Bill to take account of the wider reforms proposed.

With regard to what is included in the Bill, section 1 deals with jury service. This section provides for an amendment to the Juries Act 1976 to provide that a person who is deaf shall not be ineligible for jury service by reason only of his or her requiring the services of a sign language interpreter. I welcome this amendment and fully support the fact that those affected by deafness will not be discriminated against in this respect. I agree with the commission, which has stated that all persons should be presumed to have capacity to serve on a jury and that reasonable accommodation should be provided to secure maximum participation in jury service.

With regard to section 4, it is welcome that there will be a higher standard of reasonable accommodation for persons with disabilities in respect of certain public and commercial services, including banks, insurance companies, telecommunications and transport providers.

I am strongly in favour of the Bill before us but I have reservations in respect of what is not included, or what has been excluded, at this Stage. The Minister of State has advised that those amendments will be introduced on Committee Stage but I express my concern that adequate time will not be allowed to debate them on Committee Stage.

Overall, I am in total favour of any measure that will help those with disabilities to engage fully with society in a real, meaningful and inclusive manner.

I invite the Minister of State, Deputy Finian McGrath, to my home town of Dundalk to meet families that have adult children with severe disabilities. All they are looking for is a bit of help. The help they are looking for is respite. We have very few, if any, respite services in Dundalk and generally in County Louth. In the coming months, whenever he can fit it into his diary, I would appreciate it if he came to Dundalk to meet those families. The Minister is doing a good job. He should keep it up.

I welcome the opportunity to speak in this very important debate on the Disability (Miscellaneous Provisions) Bill. Ireland signed the Convention on the Rights of Persons with Disabilities, CRPD, on 30 March 2007 yet almost ten years later, it still has to ratify one of the most important human rights treaties of the 21st century. In that period, more than 150 other countries have ratified the CRPD.

Like many other Deputies in the House, I have raised this most important issue on many occasions. I accept that the Minister of State, Deputy Finian McGrath, has spent a political lifetime as a supporter of people with disabilities and it is very appropriate that he is introducing this legislation. While I accept that different countries take different approaches to ratification of international conventions, it is most regrettable that the CRPD has not been ratified before now.

I welcome the publication of a roadmap to ratification, which was approved by the previous Government and published in October 2015. This roadmap outlines the legislative changes required to enable Ireland to ratify the convention. Since this Bill was introduced for debate in the House, I have received a good deal of correspondence from constituents regarding its contents and lack of contents. I have received correspondence from advocates like Dermot Hayes and this evening I think of the late Tom King, who was the chairperson of Disabled People of Clare, who campaigned on this particular topic for many years.

In this regard I have some questions for the Minister of State that he might answer when he is concluding the debate. Will he, please, explain why the term "equality" has been dropped from the Title of the Bill? Why is the word “rights” not included anywhere in the Bill? Article 14(b) of the UN CRDP deals with deprivation of liberty. The absence of specific legislation on the deprivation of liberty as part of this Bill is worrying. When will legislation be developed in conjunction with persons with disabilities on that particular issue?

Will the Minister of State, please, inform the House of the level of consultation that has taken place with civil society, and specifically with people with disabilities, since the publication of the Roadmap to Ratification of the UN Convention on the Rights of Persons with Disabilities in October 2015 to inform this Bill?

Also, Article 33.3 of the convention sets out the requirement to involve people with a disability in the monitoring process. Will the Minister of State outline the way people with the lived experience will be resourced and facilitated to play a crucial role in monitoring the implementation of the UNCRPD in Ireland? I ask the Minister of State to address these questions when replying to the debate.

I thank the Minister of State for his support and his involvement in helping to resolve a particular issue I have worked on for many years. It will help solve a housing problem for four people with intellectual disabilities in Newmarket-on-Fergus, County Clare. Some years ago, it was identified that these particular individuals who had ageing parents, some of whom have since passed on, would need a housing solution. In fairness to the Brothers of Charity, which has a housing agency called Banner Housing, it joined up with Clare County Council and managed to acquire a unit at Boheroan in Newmarket-on-Fergus. They acquired five units of high-tech, modern accommodation, which is great, but once we had the accommodation the next key aim was to get operational funding.

Last year, I arranged a meeting with the chief executive of the Health Service Executive in the mid-west, Bernard Gloster, who engaged with parents and with the Brothers of Charity. Thankfully, a start to that has been made and a commitment given by Bernard Gloster that operational funding will be provided for the units, which will enable two of these persons to take up residence at those houses in Newmarket-on-Fergus. I thank the Minister of State, Deputy Finian McGrath, for his help and encouragement on that particular issue.

I welcome the introduction of this legislation. It is not before time. I ask that the various amendments the Minister of State outlined in his opening statement be introduced on Committee Stage and worked on in a determined fashion to ensure that this important legislation can be enacted as soon as possible. There is little doubt that, when enacted, this legislation will bring about positive change to a large range of legislative measures that will have a positive and real effect on the lives of people with disabilities.

I wish to share a few minutes of my time with my colleague, Deputy Margaret Murphy O'Mahony, the Fianna Fáil spokesperson on disability, who will wrap up the debate from a Fianna Fáil perspective.

I very much welcome the opportunity to speak on this issue. It is an issue that has been very close to my heart for many years and one that deserves well informed discussion. My life as a sister to Cathal, who has Down's syndrome, my experience in the education sector and my work with Special Olympics Ireland have combined toward the consistent implementation of the core tenets of the UN Convention on the Rights of Persons with Disabilities.

These core tenets represent the most fundamental rights of all persons, regardless of ability level. They include the right to good health care services, quality education and an environment safe from exploitation and abuse. They include the right to work and participate in sport. Most important, they include the right to be included as an equal member of society.

We must also remember the families and carers of those who have disabilities. They also have rights when it comes to discussing the rights of people with disabilities.

Ten years have passed since the UN convention was signed by the Government. Ratification must be the next step. It is shameful that this is the only remaining EU country that has not yet ratified the convention. While the Bill will move ratification one step closer, we must not rest here. People with disabilities deserve nothing less than full ratification.

I appreciate that the Minister of State is well-meaning and absolutely acknowledge that in recent years this has been a core issue for him. However, it is concerning that the Bill only presents part of the solution. My party and I will not stand in the way of any progress. However, I call on the Minister of State to provide a timeline in seeking full ratification of the convention. I understand from him that other amendments will come into play in terms of what has been left out of the Bill. We need to be clear on when and how these elements will be included.

I accept that Governments alone cannot do all of the necessary work to change communities. It is one thing for us to set a standard in law, but it is quite another to set a standard in people's hearts. The true fulfilment of the convention will only come about when children and adults with disabilities are treated with dignity and justice not only in writing but also in daily life. Ireland's ratification of the UN Convention on the Rights of Persons with Disabilities can serve as a national call to action for all, including Government agencies, NGOs, sports and recreation programmes, public health agencies, schools and many more. It can serve as a call to mobilise all of our resources in a shared quest to provide a brighter and more secure future for all those with disabilities in Ireland.

Sometimes we think of people with disabilities as including only those with a physical disability, such as those we see in wheelchairs. We are conscious of the need to provide access to buildings. We are to be commended for the budgets set aside to ensure physical access. However, we must not forget about people with an intellectual disability and all of the invisible barriers they face day to day. People with intellectual disabilities matter; they count and deserve a chance just like the Minister of State, me or any other person. There is an urgent need for individuals and communities throughout Ireland to become strong advocates for the ratification of the UN convention. When rights are defined only by political or judicial norms, they do little to advance the case of those facing barriers that are social and cultural. A serious job remains to be done by all of us outside as well as inside the House. The future of rights for people with disabilities requires a new positive message from us, the point of which is that we all own the rights agenda.

Motivated citizens can make a major difference as we saw in 2003 during the Special Olympics World Games. I was privileged to play my part in the organisation. I had the honour of working with 160 host towns throughout the island of Ireland. I witnessed first-hand the lengths to which people went to ensure their guests, who came from 180 countries throughout the world, would have the best opportunity to showcase their abilities. The legacy will long live on.

For schools to change, it is not only a matter for Governments alone to embrace the principles of universal education. Citizens must also demand that all children be given the right to attend school. For employment conditions to change, it is not only a matter for Governments alone to embrace the principles of non-discrimination. Business leaders and citizens must advocate for workplaces that value the contributions of all.

Ireland has the opportunity to ratify the convention and, in so doing, show solidarity with all other EU member states that have ratified the convention and begun its implementation. We have a heightened obligation to ratify and implement the convention. Everyday acts of inclusion have helped to define our social fabric. Tolerance, acceptance, togetherness, helpfulness and advocacy have all become standard components of a past, present and future Ireland.

Has there been a formal, structured consultation process with civil society and especially with people with disabilities to inform the development of the Bill? I draw the Minister of State's attention to Article 33.3 of the convention, which sets out the requirement to involve people with disabilities in the monitoring process. I call on him to outline how people with the lived experience will be resourced and facilitated to play this crucial role. I call on him to explain how the Bill will ensure people with the lived experience are the key constituents in monitoring the UN convention in Ireland. What legal advice did the Department of Health seek from the Attorney General on reasonable accommodation and ratification?

Will the Minister of State explain the cross-over with the EPSEN Act? That Act was brought forward especially to address the rights area and reference was made to it earlier. We have already addressed the point that the Bill will not bring about full ratification. What reservations does the Minister of State have in this regard?

Article 14.1(b) of the convention states people with disabilities should not be deprived of their liberty unlawfully or arbitrarily, that any deprivation of liberty must be in conformity with the law and that the existence of a disability shall in no case justify the deprivation of liberty. The absence of specific legislation on the deprivation of liberty as part of the Bill is concerning. Given the seriousness of this equality and human rights issue, has the Minister of State engaged in any formal structured discussion with civil society organisations regarding the deprivation of liberty? When will legislation be developed on the issue in conjunction with persons with disabilities?

I appreciate that a cross-departmental approach must be taken at the Cabinet. Disability matters relate to education, health and gaining significant and quality employment. I know from my work on the Joint Committee on Education and Skills that many issues arise, especially in the case of people with an intellectual disability accessing quality education. Day after day, I receive calls from parents who are concerned about their children who have autism and are unable to access primary education. If they gain access to primary education, a major issue arises in trying to access second level education, but it does not stop there. I know that the Minister of State recently met representatives of Disability Access Route to Education, DARE, which ran an excellent programme with Maynooth University. It was able to provide the personnel and staff to ensure some clients were able to attend Maynooth University and participate in third level programmes. They did not take full modules but part modules and they did extremely well. DARE covered all of its costs, but Maynooth University was unable to access any funding from the Department of Education and Skills. If we truly believe everyone in the country has a right of access to education, that right must include access to third level education. While I accept that it is an issue for the Minister for Education and Skills, I believe it is one the Minister of State should take up with the Minister. In a situation where someone with an intellectual or a physical disability wishes to access education, has the capability to do so and has support from the service provider, we should absolutely encourage and support that person.

DARE is an excellent supported employment service in an area that stretches through County Kildare, west Wicklow and into counties Carlow, Laois and Offaly. To date, it has facilitated 156 people in accessing the paid jobs of their choice in the open labour market.

The vast majority of these are in the private sector, with notable exceptions. Kildare County Council continues to be a fantastic supporter of the process, with people employed both in its headquarters in Áras Chill Dara and in library services around the county. The local HSE employed somebody recently in its stores department in Naas. The Minister of State visited Naas hospital and had the opportunity to meet some of the young people working there. The project is called Project SEARCH. Essentially, it supports young people with an intellectual difficulty to participate in a real and meaningful internship to prepare them for the world of work. In fact, I am working with the organisation to try to find a module we could provide in Leinster House in terms of an internship programme with Deputies and Senators. When a person leaves Project SEARCH, KARE tries to find a meaningful job for the individual. This is what KARE calls "job finding", which is endeavouring to match the people's skills, interests and dreams with what a particular employer might have to offer. However, there are barriers within the civil and public service, mainly because of the policies and requirements that are in place. This is something the Minister could take up and perhaps we could work collectively on it. If there are opportunities in the public sector, we should be able to find them.

It is very important to have this debate and that we as a Parliament, nation and global citizens seize this opportunity to ratify the UN Convention on the Rights of Persons with Disabilities. We must do it with conviction and focus. A progressive Ireland starts when each of our citizens, regardless of ability or disability, feels empowered to make a difference. We must do it with resolve to meet the many challenges that will surely arise, especially when support for our fellow citizens, including my brother and the Minister of State's daughter, will be positioned against issues such as the public deficit, budget shortfalls, spending cuts and the like. We must do this also in memory of the pioneers who went before us, who dreamt of a day when governments around the world would raise their voices in unison and mobilise to benefit all citizens, with no division. We must confront these challenges optimistically and courageously. I refer to the words of the Special Olympics athletes' oath that inspires millions around the world and many in this country with the power of the human spirit: "Let me win. But if I cannot win, let me be brave in the attempt".

As I spoke at length on this Bill on 1 February, I will share the remainder of my time with my colleagues, Deputies Eamon Scanlon and James Lawless.

To summarise the Fianna Fáil point of view, I consider the Bill to be half baked. As I outlined the problems I had with it on the last occasion, I will not revisit them. In the interests of progressing ratification of the UN convention, my party will support the Bill, although we will table many amendments. I will attend the meetings of the justice committee to ensure the amendments are passed. We are not happy with the Bill, but we do not wish to delay matters.

If I might digress for a moment, I am very disappointed with the latest news about the Repreeza drug. We discussed it at the meeting of the health committee today but I ask the Minister of State to use his influence to see if the decision can be revisited.

I wish to raise an issue I have raised with the Minister on a number of occasions previously. In fairness, I am aware that the Minister of State is doing his best to resolve the matter. It relates to a facility built in Sligo to cater for adults and young people and provide respite care for parents and families. The facility was built at a cost of €1.2 million six years ago. There were 28 service users, although unfortunately many families tell me they are having great difficulty getting any respite night. The Health Information and Quality Authority, HIQA, is part of the problem. The staff numbers have been allowed to drop and, as a result, HIQA has said the staff numbers are not sufficient to cater for the people concerned. Nobody can begin to understand the difference this type of service makes for families with family members who have disabilities. There is no question that they need respite care and they must know their family members are in a place where they are safe and well looked after. Unfortunately, that is not the case at present. I am aware that the Minister has made funds available but I am told that it will take another two to four months for this issue to be resolved. That is unacceptable. We must support the parents and the people concerned.

With regard to Orkambi, we were given a presentation today by two parents, the sister of a girl from County Sligo who died at the age of 21 years, the mother of a child aged 12 years, the mother of a child who had passed away and the CEO of Cystic Fibrosis Ireland. They told us about the difference the drug could make. Jillian McNulty, who has been using the drug, gave a presentation also. Her quality of life has changed completely. The CEO told us that 56,000 bed nights were used in hospitals last year by cystic fibrosis, CF, patients who were obliged to go to hospital. I believe massive savings could be made. Unquestionably, there will be a requirement for bed nights in hospitals, but savings could be made if Orkambi could be made available. We should not be putting a price on a life.

I will be brief. I welcome the progress with the Bill, although my colleague, Deputy Margaret Murphy O'Mahony, proposes to table many amendments on Committee Stage to improve it and deal with some issues.

I had the pleasure of meeting a most amazing, passionate and articulate young woman last week, Niamh Herbert from Sallins, who attended the House with me to ask Deputies to advance the passing of this Bill as expeditiously as possible and, indeed, to ratify the convention. Niamh is a student in Trinity College Dublin and she represents herself, the students' union in the college and a group called Disability and I. I understand she subsequently corresponded with the Minister of State and is due to meet him. I thank the Minister of State for that. She met Deputy Margaret Murphy O'Mahony last week also.

Unfortunately, Niamh ended up in a difficult situation two or three days later. Unknown to us at the time, she attempted to board a Ryanair flight to travel to London with friends from college and was told she could not do so. Despite the obvious presence of her wheelchair, the Ryanair staff asked her to walk up the steps to the airplane. She was left sitting on the tarmacadam, crying, as the airplane took off without her. Her friends, for financial reasons, had no choice but to board the airplane and go on the journey. This is an horrific, barbaric event to happen to anybody, most of all to somebody vulnerable. I plead with all Members to advance the convention to address these issues so this type of situation does not recur. I was ashamed to see from the map that Niamh included in her presentation last week that the convention had been ratified across Europe and beyond, including by many countries that might be considered to be less progressive than Ireland. Ireland stands alone among European and neighbouring states as yet to do so. Let us not allow what happened to this young lady to recur. Let us ratify the convention with as much haste as possible. Let us get it right, but let us do it quickly. I welcome the progress on this.

I am sharing time with Deputy Carol Nolan. Táim sásta an deis a fháil labhairt ar an mBille tábhachtach seo. The principal aim of the Disability (Miscellaneous Provisions Bill) 2016 is to reform national law to enable Ireland to ratify the UN Convention on the Rights of Persons with Disabilities. Sinn Féin welcomes any progress that is made towards the full ratification of the long awaited UNCRPD and we will therefore support this Bill’s passage to Committee Stage.

This important convention seeks to protect and promote the rights of people with disabilities. The rights set out in the convention are rights that all people have as people, regardless of physical or mental status.

As mentioned time and again, it is to Ireland’s shame that it has taken this long to address the legal and administrative steps that provide for the convention’s full ratification. Ten long years to be exact. We must all now ensure that the legislation required to ratify this convention is progressed as a matter of urgency.

It is my opinion that successive Governments have been far too slow to act on very important issues. One important cohort of people that springs to mind are the thousands of children with disabilities who are in receipt of the domiciliary care allowance but who have been unable to secure medical cards. The Minister of State will be well familiar with this issue. A commitment was made by Government in budget 2017 that an automatic medical card would be issued to all those children but this has still not happened. This must not drag on any longer. Sinn Féin produced legislation on this need and entitlement that could be introduced immediately if the Minister of State had, and I say so respectfully, the political will to do so and the support within Cabinet to progress it. These children cannot and should not have to wait any longer and I encourage this matter to be addressed as a matter of urgency.

Sinn Féin welcomes any progress made to move from a medical to a rights-based approach to the provision of mental health and disability services. We welcome, for example, the fact that this Bill amends the Juries Act 1976 so that a person who is deaf shall not be ineligible for jury service by reason only of his or her requiring the services of a sign language interpreter. Let us hope that, in the coming months, another positive step will be taken with the final passage of the Recognition of Irish Sign Language for the Deaf Community Bill 2016. It is, however, a great worry to me to note that many civil society organisations working in the area of disability have real concerns about this Bill, including real questions about whether this legislation would be fully compliant with the UNCRPD. A critical aspect when formulating legislation is engagement with NGOs and those who are directly affected by the proposed legislation. It is unfortunate, disappointing and, in my mind, bad practice that no public consultation on these matters has taken place.

That is not true.

The voice of lived experience is the most important element to ensure UNCRPD compliant legislation and this has not happened in Ireland’s case and that is true.

Equality is at the core of the UNCRPD. Why has this word been taken out from the Title of this Bill? This is unacceptable and I would like to have clarification from the Minister on why this important word was dropped from the Title.

Article 33.3 of the convention sets out the requirement to involve people with a disability in the monitoring process: “Civil society, in particular persons with disabilities and their representative organisations, shall be involved and participate fully in the monitoring process”. However, it is again very disappointing that the opportunity to include persons with a disability in a meaningful way in the advisory committee to the Irish Human Rights and Equality Commission in its monitoring capacity has not been taken.

The UNCRPD committee has recommended that states’ parties "establish strong and efficient focal points within each ministry and State institution responsible for implementing the Convention" and this Bill provides for a focal point in the Department of Justice and Equality for implementing the convention. Sinn Féin has continuously called for the Taoiseach to be in charge of disability inclusion and in this instance we believe that the Department of An Taoiseach would be the best focal point, as it would ensure that the UNCRPD was given a cross-departmental focus, which it most certainly requires.

We will of course be tabling amendments on Committee Stage that will address our concerns. In the meantime I would appreciate clarity from the Minister of State, Deputy Finian McGrath, on the points I have mentioned. I also call on him to engage with and consult civil society on all these matters. To rephrase the principle of "nothing about us without us" that guided the negotiation of the convention, the Minister of State must ensure there is "nothing about them without them".

Go raibh maith agat a Leas-Cheann Comhairle as ucht an deis seo chun labhairt ar an topaic fíorthábhachtach seo anocht. Sinn Féin has long campaigned for the full implementation of the United Nations Convention on the Rights of Persons with Disabilities and we welcome this legislation in so far as it goes towards that aim. As many Deputies have outlined in this House tonight however, it is shameful that the convention has still not been ratified. I attended a meeting a year ago hosted by the Offaly Centre for Independent Living and at that meeting there were very strong views and great disappointment expressed that we had still not got that convention ratified. It is just not good enough. We need to move forward on it as quickly as possible.

We share many of the concerns of disability groups and other non-governmental organisations in that this Bill does not go far enough. One of the main concerns that has been expressed to me and highlighted by other colleagues this evening is that there has been no public consultation with the various stakeholders on aspects of this legislation. We believe this Bill could be strengthened and we will be tabling amendments on Committee Stage to ensure that the Bill fully complies with the United Nations Convention on the Rights of Persons with Disabilities. For example, while we welcome the provisions in respect of jury service, electoral Acts and expansion of reasonable accommodation, there is clear scope for the Minister to go further. The issue of deprivation of liberty is a core issue that needs to be addressed to ensure Ireland's full compliance with the UN convention, yet the Bill does not deal with this matter. Furthermore, this Bill provided an opportunity to include persons with disabilities in an advisory committee to the Irish Human Rights and Equality Commission in its monitoring capacity. It is disappointing this was not done because the voices of the people affected should always be foremost.

Overall, while I welcome many provisions of this Bill, it is a missed opportunity to give full effect to the UN convention and our support is dependent on these issues being fully addressed on Committee Stage.

I thank the Leas-Cheann Comhairle. I will get the positive stuff out of the way at the beginning.

I thank the Deputy.

Any legislation that does anything positive to enhance the rights of those with disabilities or to move them a little closer to some level of equality, which our society fails to give people with disabilities on many levels, has to be welcomed. The specific provisions of the part of this Bill that is actually written are to be welcomed.

As has been mentioned, people with a hearing disability will not be excluded from sitting on a jury purely because they require sign language. The Bill repeals the prohibition on a person of "unsound mind" standing for election to the Dáil. The National Disability Authority will become a monitoring authority, although, as has already been said, certain provisions need to be attached to that to enhance the monitoring such that people with disabilities themselves, the people with the lived experience of disability, are key to the monitoring process, which is a critical aspect of the UN convention. Nonetheless, there has been some progress.

The Bill introduces a standard regarding reasonable accommodation. The public sector quota for employing people with disabilities has now been extended to the Garda. The Bill gives the Irish Human Rights and Equality Commission more responsibilities. All these things are good, but they are a long way short of what is needed to give full equality and rights to people with a disability. Critically, this is not the ratification that was promised.

The Bill suggests the thrust of it is about removing legislative barriers to the ratification of the UN convention. I am not an expert in this area; the experts are the people with the lived experience. Certainly those people, with whom I have been working to a considerable extent particularly in recent months, and those who advocate for them reject the contention that the need to remove legislative barriers or introduce legislation to make us compliant was a legitimate excuse for the ten years of indefensible delay in ratification. Somebody has to be telling the truth.

The solicitor and chief executive of the Centre for Independent Living, Gary Lee, recently wrote in The Irish Times that there was no legal impediment to the ratification of the UN convention. However, the Minister of State maintains, as successive Governments have maintained, that there was and that this was the justification for the delay. I just do not buy it, Gary Lee does not buy it and the people to whom I talk, who have the lived experience of disability, do not buy it.

I do not doubt the Minister of State's personal commitment on disability; he has a long record on it. However, I believe he is a prisoner of Fine Gael on this issue.

I try to get the job done and it is hard at times.

I have no doubt about that. It certainly would be my suspicion and belief that, as Gary Lee has set it out, had we ratified when we should have ratified ten years ago when we signed the convention, we would not have been able to carry out all the nasty, vicious austerity cuts that were inflicted in recent years that disproportionately impacted on people with disabilities because we would have been called out by the UN on those things. All the cuts in housing, public transport, health and social protection disproportionately and brutally impacted on people with disabilities. Gary Lee listed just a few of them, including the cuts to the mobility allowance, the motorised transport grant, the benefit allowance, medical cards and home helps.

Before I ask the Deputy to move the adjournment, I want to make a point of clarification. We had a short exchange after Deputy Michael Harty contributed.

I was going to say that, actually.

The record shows that the word was used. The Minister of State, Deputy Finian McGrath, withdrew it and apologised. That is the end of the matter.

I caution the Minister of State as a prisoner of Fine Gael,-----

That is not the one.

-----its record of dealing with its prisoners is horrific.

It executed them by the dozen.

That is not what-----

So the Minister of State should be very careful.

That is not what I was referring to.

I take Deputy Caoimhghín Ó Caoláin's point.

I ask Deputy Richard Boyd Barrett to move the adjournment.

To be continued tomorrow.

Or at some further date.

Debate adjourned.
The Dáil adjourned at 10.15 p.m. until 12 noon on Thursday, 23 February 2017.
Top
Share