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Joint Committee on Justice, Defence and Equality debate -
Wednesday, 17 Sep 2014

National Disability Authority: Chairperson Designate

Apologies have been received from Deputies Anne Ferris and Marcella Corcoran Kennedy and Senator Ivana Bacik.

The purpose of the meeting is to have an engagement with Ms Helen Guinan, the chairperson designate of the National Disability Authority. On behalf of the joint committee, I thank Ms Guinan for appearing before us. Members look forward to hearing from and engaging with her in this session. We will first hear a short opening statement from Ms Guinan followed by questions from members.

I draw Ms Guinan's attention to the fact that witnesses are protected by absolute privilege in respect of the evidence they give this committee. If, however, a witness is directed by the committee to cease giving evidence on a particular matter and the witness continues to so do, the witness is entitled thereafter only to qualified privilege in respect of his or her evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable.

Members are reminded that under salient rulings of the Chair, they should not comment on, criticise or make charges against a person outside the House or an official by name in such a way as to make him or her identifiable. I invite Mr. Guinan to make her opening statement.

Ms Helen Guinan

I am honoured to be nominated by the Minister for Justice and Equality, Deputy Frances Fitzgerald, as chairperson designate of the National Disability Authority. I am looking forward to the challenge and the opportunity to oversee the important work the authority does as the independent statutory advisory body to the Minister on disability policy and practice and in promoting universal design.

I have spent many years working with or on behalf of children and young adults with intellectual, physical and sensory disabilities. I recently retired from my post as principal of St. Paul’s special school in Cork. I have been closely involved over many years in policy development and implementation at national level with a number of organisations, including the National Council for Curriculum and Assessment, the National Council for Special Education and the National Federation of Voluntary Bodies. I greatly enjoyed the opportunity to gain a national and international perspective on advancements and improvements for persons with disabilities. My grounding as a teacher and principal in a busy school meant I always had an eye on the practical implementation of the policies and strategies in question.

As principal of a large school for students with highly complex needs, my priorities were to lead, encourage, counsel and guide the immediate and wider school community towards providing the highest standard of education and care for our students. Parents and families were a central part of that community, which also included the invaluable work of multidisciplinary team members.

The National Disability Authority, under the National Disability Authority Act 1999, is an independent public body whose principal function is to provide evidence based information and advice to Government on policy and practice relevant to the lives of persons with disabilities. The authority is in a unique position in that it sits independently of the disability sector, Departments and State agencies. It is not a charity or service provider, nor is it a representative or campaigning organisation. It has, therefore, a critical role to be an independent adviser. It has a duty to ensure that the information and advice it delivers to the Minister for Justice and Equality, other Ministers and officials are informed by robust evidence, research and knowledge of the lived experience of persons with disabilities and an understanding of the policy context.

While the overarching role of the National Disability Authority is to provide advice, other functions include providing advice on co-ordination of services to people with disabilities, undertaking or commissioning research and developing standards and guidelines as well as monitoring their implementation. The authority has an important role as an honest broker, working with the relevant stakeholders to identify realistic and achievable actions to progress the inclusion agenda in line with national strategies and international conventions.

The National Disability Authority also has the highly interesting role of promoting universal design, which refers to the design of places, products, services, information, communications and information technology in order that they can be readily accessed, used or understood by people, regardless of their age, size, ability or disability. I am conscious that other countries are keen to follow the operation of the centre for excellence in universal design and that the centre is playing a key role in standards development at national and international levels.

The National Disability Authority's strategic plan sets out the main areas of work in which it is engaged. Key goals include the provision of guidance on the implementation of the national disability strategy, which covers all persons with disabilities and most policy areas. Disability needs to be embedded into all mainstream policy and mainstream services. While we are at an early stage of this journey, the national disability strategy can provide the means of driving this forward. Another key area of work is in supporting the implementation of the significant change programme in disability services aimed at putting the person at the centre of the service and supporting people with disabilities to live ordinary lives in ordinary places. People with disabilities need to be enabled to choose where and how they live in order that they can participate to their full potential in the community alongside everyone else. A further key goal of the National Disability Authority is to work on a ten-year comprehensive employment strategy. Such a strategy could deliver real change in the lives of those who have or acquire a disability. Other major areas of work include the provision of advice on ratifying and implementing the UN Convention on the Rights of Persons with Disabilities and promoting universal design.

The board of the National Disability Authority, which I have been asked to chair, has a majority of people with disabilities, their representatives, families or carers. This will ensure our work is guided by people's real, lived experience of disability. As with all State bodies, the board is subject to the highest standards of ethics and of governance, including the code of practice on the governance of State bodies and public procurement rules.

I look forward to chairing the board and providing strategic direction to the executive as the National Disability Authority, NDA, plays its role in guiding policy and practice that can enable people with disabilities in Ireland to participate in Irish society as equal citizens. My years of experience in motivating people from a wide range of backgrounds and experience to work collaboratively towards excellent service development and provision will be useful in my role as chair of the National Disability Authority.

That was very interesting.

I welcome Ms Guinan before the committee and wish her well in her work with the National Disability Authority, NDA. I have some questions on the points raised in the submission. Perhaps I am showing my bias as an ex-principal but when I saw that Ms Guinan has been a teacher in a busy special school, I thought it was good to see somebody dealing with the practical implementation of policies on the ground. Mistakes have been made when people were appointed who may not necessarily have had experience on the ground. I welcome Ms Guinan's appointment. In her submission, the witness mentioned parents and families as a central part of the community in the school. Will that be a strong focus in the NDA and its future outlook?

Ms Helen Guinan

Yes, although I should qualify that answer by saying I have not yet taken up the role.

Is it Ms Guinan's vision?

Ms Helen Guinan

Yes, it would always be part of that. Families are a central part of everything that happens. When something happens to a person with disabilities, there are repercussions throughout a family and even in a community. They form a central part of the issue.

In her submission Ms Guinan also makes the point that disability needs to be embedded in all mainstream policy and services. Have we moved on with the mainstreaming process compared with ten or 15 years ago or have we remained static?

Ms Helen Guinan

We have certainly moved on. The supports needed in the mainstreaming process are critical; it is one area where much work still needs to be done. It is all very well to say that mainstreaming is necessary - as it absolutely is - but unless supports are there, it can become really difficult for people delivering any service to accommodate particularly severe needs.

We are discussing and designing policies and services and I mentioned earlier the parents and families of children or young adults with disabilities. Will they play a vital role in the development of the general national disability strategy?

Ms Helen Guinan

That is a strength of the National Disability Authority as it can speak to everybody involved. It must consider everybody's opinion and not just one particular group over another. It must be an informed and research-based process. There would be a balance of the real, lived experience with the international and national research. There is a place for everything.

Ms Guinan also mentioned that the authority is responsible for advising on ratifying and implementing the UN Convention on the Rights of Persons with Disabilities. There is ongoing debate among legislators and disability groups about ratification, as many want to ratify the convention. Some argue that it would be better to put the services in place first and then ratify it. What is Ms Guinan's advice or what is best international practice?

Ms Helen Guinan

There is a division among countries.

Ms Helen Guinan

I would not be qualified to make a judgment on that just yet.

These are early days.

Ms Helen Guinan

These are early days for me anyway.

I strongly advise that we ratify this and get on as much as possible. We already have some elements in place, which is good. Importantly, Ms Guinan indicated that the board of the NDA has a majority of people with disabilities, their representatives, families and carers. I welcome this important step. That is not the case for many organisations dealing with disability or service organisations. I urge that this point be considered in a national disability strategy, especially if it takes in mainstreaming or including people. We recently witnessed a row at the Central Remedial Clinic at Clontarf. It has a brilliant new board but there is a lack of people with disabilities on that board. I welcome that the NDA has a majority of such people, and although that is refreshing, we must up our game with the issue. I urge the NDA to focus on that as a broad policy issue.

Ms Helen Guinan

I will bring that back with me.

As Members we are being lobbied by the carer representative associations about cutbacks in recent years. In fairness to all members, regardless of political perspectives, we have much empathy with carers. They do heroic work while giving love, support and sustenance to their dependants. We want to get to a position where these carers can be fully supported. Leaving aside empathy and support, the reality is that carers save the State a fortune in money. What is Ms Guinan's vision of how carers in families will be supported by the disability authority?

Ms Helen Guinan

As I have not started in the role yet, I do not have an intimate knowledge of it. All I can do is say that I will bring back that keen observation. That issue is close to everybody's heart.

Another issue is the mobility allowance and the motorised transport grant. Both of those schemes were suspended because the Ombudsman found them to act outside the law with regard to equality legislation because they were not available to elderly people. When the Department considered the matter, the estimate to deal with it came to approximately €500 million and that would not be economically sustainable. The issue has dragged on for quite a while. I have a particular interest as the committee which I chair, dealing with public oversight, works with the Ombudsman. We have brought in a previous Secretary General of the Department of Health on a number of occasions, as well as Ministers. Will Ms Guinan seek to take an active interest in the matter, as it seems these are lost schemes for those who wish to avail of them?

Ms Helen Guinan

Yes. I thank the Deputy.

I thank Ms Guinan for her presentation, which was clear and concise. I have no doubt she will be appointed to the role and we wish her well. All of us value the work by the NDA, which fulfils a vital role in advising the Minister on the disability area. I have a question which relates to Ms Guinan's area of expertise, as I know she has worked in special education. Throughout the country there is a growing desire on the part of parents to achieve inclusion for children with disabilities, and inclusion and integration is important for parents of children with special needs and for the broader school community, as it can learn just as much from the process.

It appears that within the Department of Education and Skills there is no strategic plan at all for the provision of educational opportunities. Within schools I have seen preschool provision but no primary places in the same building. I have seen towns where primary schools have provided specialised units but post-primary schools have no provision and, much more importantly, no plan for any provision.

Given the investment made over the years at primary level, many of those children are progressing to post-primary level, as we would wish. We will see people criss-cross the country seeking school places that are not available in local communities. These children should be able to attend school locally with their siblings, friends and neighbours. Education does not feature prominently in the opening statement made by the National Disability Authority, NDA, but this may be due to bias arising from where that organisation is coming from. Significant work must be done in the area of education to compel the Department of Education and Skills to implement a strategic plan for the provision of integrated services in existing schools as this is not occurring at the moment.

Ms Helen Guinan

The National Disability Authority has a representative on the board of the National Council for Special Education, NCSE, and I am a council member. I know the NCSE is working very hard with the Department of Education and Skills on the provision of services for and the inclusion of children with disabilities. Much work is being done on this and the NDA is feeding into the process. I am keen to keep an eye on this area as I agree that gaps exist, though they are being identified.

I thank Ms Guinan for her opening statement and I wish her every success in her new role. I have some questions on access to services for people with disabilities. I am a member of the Committee on Transport and Communications and my interests therefore overlap. Some public bus service operators still do not provide wheelchair access. Safety is an issue for people with disabilities and an incident this summer in Raheny, where I live, comes to mind. An elderly blind woman went to the DART station, stumbled off the platform in front of a train and was killed. This was a tragedy and, though it was the kind of thing that can happen, it raises the question of the safety of people with visual impairment and physical disabilities. Perhaps the National Disability Authority could address these matters.

I congratulate Ms Guinan on her pending appointment. Knowing her CV, I do not doubt she will do a very good job. The Government has asked the NDA to create a ten-year employment strategy, and I think the best thing for a person with a disability is a job that allows him or her to contribute to society, pay taxes and feel equal. Is the creation and implementation of an employment strategy important to the NDA?

Ms Helen Guinan

Yes, it is important to the NDA. Having spoken to the director of the National Disability Authority, I am aware the employment strategy is very high on the agenda. Much work is being done under the national disability strategy to move the ten-year employment strategy forward. The need for and importance of the strategy is recognised.

I suggest the committee invite Ms Guinan to return in a year to give an update on progress on the ten-year employment strategy and the other work that will be done by her.

It might be appropriate to link that invitation to the publication of the National Disability Authority's annual report as it will give us a document to focus on. When is the annual report due?

Ms Helen Guinan

The board will meet at the end of this month.

In that case Ms Guinan may be back here before she knows it.

I thank Ms Guinan for the presentation and I congratulate her and wish her the best. I am delighted to see that she has a background in education and experience at the coalface. In my family life, in the past year and a half, I have begun to deal with the issue of coping with disability and I can see very clearly how far we have to go on priorities in the strategic plan. Ms Guinan mentioned the disability strategy, living independently in the community and universal design of the environment. Progress on universal design of the environment will impact significantly on whether we can progress the notion of living independently in the community. The concepts are very much connected. Can Ms Guinan comment further on universal design? Does a centre operate to produce standards and so on? Are efforts being made to reach out to industry and those working in this area on the matter of universal design? In my experience technology relating to sight loss is way behind and I hope the industries in this area are working towards improvements.

Ms Helen Guinan

It is my understanding that efforts are being made to reach out to architects, building designers, product designers and so on. People now come to the National Disability Authority and the universal design centre seeking information, and this is a measure of the respect that exists for the advice given. On one level this is wonderful, but it presents challenges for the future relating to retirements that are forthcoming and the skills sets involved. This must be addressed.

How many people are working in the universal design centre?

Ms Helen Guinan

I am not sure because I am referring to the work of both the National Disability Authority and the universal design centre.

I would like this committee to be briefed by the people who work in the universal design centre to learn more of the work they do.

I support that suggestion because I was asked to launch the tourism toolkit that was produced. Many representatives from the hotel industry attended the event at the Guinness Storehouse and I was very impressed by what they were trying to achieve. Much of it was common sense but sometimes common sense must be tabulated and disseminated to be acted upon.

Ms Helen Guinan

I know that they are achieving international fame and I look forward to learning more about this aspect of things.

Perhaps Ms Guinan could arrange a briefing note to be sent on this to give the committee some information beforehand.

Autism is an issue about which Ms Guinan probably knows more than me. It seems an increasing number of children are presenting with the condition. Does the NDA have plans for an autism strategy similar to that in Scotland?

Ms Helen Guinan

It is a question of reaching a balance between the specific needs of a person with autism and the wide range of needs across the spectrum.

If mainstream is to accommodate the needs of people with disabilities it must look at the specific needs and generally be able to accommodate all needs, however severe or mild, and work towards not excluding anybody.

The strategy in Scotland is from cradle to grave, right through to housing, employment and all other services. I do no know what work has been done by the authority in that area but we would be interested to find that out because it is an issue we are all presented with many times. As Deputy Ó Fearghaíl said, and I agree with him, the issue of second level schools not having ASD centres and so on and that children have to travel by bus far away from their home place are not what we want. Another issue which is of interest is that some schools will have centres but others refuse to have anything to do with it. We need to encourage all second level schools to play their part.

Ms Helen Guinan

There is also the issue of the inclusion, apart from special classes, of children into the mainstream classes-----


Ms Helen Guinan

-----and the supports that needs to be in place for them.

That is not only for autism but Down's syndrome and all similar conditions. Will the Disability Act 2005, the EPSEN Act 2004 and the sectoral plans be part of the progress report that Ms Guinan will present to us in a few weeks' time?

Ms Helen Guinan

I will know more about that next Monday.

As the EPSEN Act has not been fully implemented yet, perhaps the witness would look at that. How long is Ms Guinan's tenure of office?

Ms Helen Guinan

I understand it is three years.

If Ms Guinan were to appear before the committee in three years what would she like to tell the committee she had achieved?

Ms Helen Guinan

I would hope, if the country is out of the recession, that the needs of people with disabilities would be to the forefront in that recovery and that it will mean, as Senator Conway said, the employment of such people will not be forgotten, that all services would put a cross-sectoral support in place and that various sectors would work together collaboratively under the national disability strategy. There is a framework for it and it is matter of getting everybody to pull together.

My final question is on mental health issues. Does Ms Guinan see herself taking a huge interest in that whole area?

Ms Helen Guinan

I am looking forward to learning more about that area.

We have two invitations for Ms Guinan. One is to come in with her CEO to speak about the annual report following its publication and also to give a briefing on the Centre for Excellence in Universal Design to enable us find out a little more about the work being done there. Are there any further points or questions?

May I ask one quick question? I have listened to an interesting debate between the Chairman and Ms Guinan on autism and education. I am concerned at something that has been happening in the past seven or eight years. If a school in a community is really good about including children with disabilities and there is another mainstream school about two miles away, there is a huge move for all the children with disabilities to go to the former school because it has the resources and the proper equipment, while the more academic children go to the other school. Part of Ms Guinan's brief is to advise the Minister on mainstreaming and bringing us all together. That is happening in some parts of the country and I am concerned about it. It is like a division in some schools.

The more academic children will want to go to college and the children with special needs are in another school down the road. I am concerned about that issue in the long term. Perhaps Ms Guinan would think about this in terms of advising the Minister as there could be more division in society, particularly at second level. The position is better at primary level. As soon as the word gets out that a school has an autistic unit or a unit for children with Down's syndrome, another school in the area has all the children who are getting As and Bs in the junior certificate examination. I am concerned about the division and would ask Ms Guinan to keep an eye on this in the next couple of years.

Ms Helen Guinan

The work started by the then Minister, Deputy Quinn, on admissions and enrolment policy will have an impact whereby schools will not be able to refuse admission and the barriers will be removed.

A mix is always good.

Deputy Buttimer wishes to come in on that point.

May I make a brief point?

Yes, the Deputy is welcome.

I thank the Chairman and members. I congratulate Ms Helen Guinan on her appointment. I know her and commend her to the committee. In her job in Cork in the COPE Foundation she worked as a principal and as a schoolteacher. As a person she brings tremendous value to the role to which she has been appointed. Members will find in Helen somebody who has a vision and an interest.

I join Deputy Buttimer in echoing those comments as I am sure all my colleagues do. We were very impressed with Ms Guinan's presentation, her dedication and enthusiasm for the role. I wish her well and thank her for appearing before the committee. We hope to engage with her again in the not too distant future.

Ms Helen Guinan

I thank the committee.

The committee will notify the Minister that it has had this engagement with Ms Guinan.

The joint committee went into private session at 2.36 p.m. and adjourned at 3.03 p.m. until 11 a.m. on Wednesday, 24 September 2014.