I apologise for the late start. As delegates can see, the committee had other matters to deal with this morning. Witnesses from the National Disability Authority are here to make a presentation on issues raised in its report, Towards Best Practice in the Provision of Health Services for People with Disabilities in Ireland. I welcome Ms Iris Elliott, senior policy and public affairs adviser, Ms Marion Wilkinson, policy and public affairs adviser, and Mr. Erik Koornneef, senior standards officer. Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the House or official by name or in such a way as to make him or her identifiable.
National Disability Authority: Presentation.
Ms Iris Elliott
The National Disability Authority welcomes the opportunity to address the Joint Committee on Health and Children to discuss its work and report, Towards Best Practice in the Provision of Health Services for People with Disabilities in Ireland, which we launched in January 2004. The authority was established in the National Disability Authority Act 1999 as an independent, statutory agency under the aegis of the Department of Justice, Equality and Law Reform. The authority works on the State's behalf to promote and secure the rights of people with disabilities and to ensure that services provided to them are of the highest standards and quality. The authority has statutory remits in the areas of policy, research and standards. In 2003 it commissioned a series of reports on health, further education, training and employment and transport to review national and international policy and legislation, map the range and quantum of services and identify international good practice in order to provide a resource to colleagues in the disability, health, further education and employment and transport sectors, inform the development of our work programme in these key areas and stimulate dialogue with key stakeholders.
During 2004 the National Disability Authority disseminated widely the Towards Best Practice reports, met colleagues in Government Departments and key agencies and held national and regional consultation meetings with statutory and disability organisations. In 2005 the Towards Best Practice reports and subsequent dialogue on their findings and recommendations inform the direction of health work within the NDA. The authority notes that significant developments have taken place in the strategic context within which it undertakes its health work, including the publication of the national disability strategy and the reform programme in health.
The Towards Best Practice report identified 11 action areas for future work. Although the report focused on disability and mental health services, the National Disability Authority considers that its priority areas are relevant to both specialist and mainstream health provision. The 11 action areas identified were as follows: a rights and social model of disability; disability policy development and the reform programme in health; user involvement and participation; equality, equal status reviews and disability proofing; quality developments and standards; service provision; co-ordination and integration of services; awareness raising, training and guidance; information accessibility; data; and health service mapping.
We considered it useful to discuss with the committee the National Disability Authority's approach to health work, which is underpinned by the following ideas: commitment to a social model of disability; support for health service provision that is equitable, person-centred and promotes the independence, participation and leadership of people with disabilities; commitment to a holistic model of health, recognising that traditionally health provision for people with disabilities has focused on individuals' impairment; valuing the importance of population health approaches, again recognising that traditionally health provision for people with disabilities has focused on treatment services; analysis of health and disability using an equality and human rights framework, which recognises that health is a human right and that it is essential to understand the impact of health inequalities on people with disabilities; recognition that people with disabilities experience a similar range of health issues and needs as the general population, in addition to specific health needs that may arise as the consequence of impairment or disability; commitment to the mainstreaming of health provision for people with disabilities while valuing competence around specific impairments and disabilities; and commitment to mainstreaming services, such as housing and transport, which are currently provided by the health sector but provided for the general population through other Departments.
I will now give some examples of diverse work undertaken by the National Disability Authority under our statutory remits of policy, research and standards. Under policy, the NDA is engaged with colleagues in the health reform programme to examine ways in which they can make health provision appropriate, adequate and progressive for people with disabilities. The National Disability Authority also engages with the expert group on mental health policy. It works on specific topics, including violence against people with disabilities and oral health and disability. These examples will give members a flavour of the diversity of the work in which we are engaged.
In terms of research, I draw members' attention to work we will publish in 2005 on health inequalities and disability. This research will include specific reference to mainstream health services to complement the work carried out as part of Towards Best Practice on mental health and disability services.
In terms of work on standards, I draw attention to a couple of areas of work in which we are engaged. We recently launched a nationwide consultation phase on the practice of person-centred planning in the provision of services for people with disabilities, which will lead to the publication of a set of recommendations on good practice of person-centred planning. In addition, the National Disability Authority formally proposed the development of national standards for disability services to the Department of Health and Children in June 2002. Since then, the NDA and the Department have actively worked in partnership on this project. This resulted in the NDA forwarding the standards for approval by the Minister of Health and Children in October 2004.
The National Disability Authority welcomes this opportunity to meet with the Oireachtas Joint Committee on Health and Children and looks forward to future contact.
I apologise for the delay in the proceedings which affected everyone. I must leave at 12.15 p.m. even though I came to the meeting to meet the National Disability Authority. The delegation is welcome. A difficulty arose with the service providers concerning the national standards. Has agreement been reached on the issue? What is being done to progress the national standards? The application of proper standards is a major issue for service users.
I was interested in the commitment to a social model of disability to which the submission refers. This appears to be at variance with the Disability Bill, which relies on a medical model of disability. What is the NDA's view on the Disability Bill and its definition of disability?
My questions focus on the Disability Bill because ultimately the NDA and everyone concerned will be governed by the legislation. The first of the 11 action areas identified by the National Disability Authority is a rights and social model of disability. How does that sit with the Disability Bill?
With regard to the chairperson of the National Disability Authority, who is not present, does a conflict of interest arise when a service provider is charged with the task of establishing standards?
Deputy Devins took the chair.
I, too, welcome the delegation. I hope it enjoyed the other session we sat through. I am glad the gender balance has been redressed given that most of those in the room during the previous presentation were men. I say that as a man.
The Deputy forgot to mention he is a man from Tallaght.
It is important to meet delegations at committee level, which is where the real work of the Oireachtas is done. It is good to have an opportunity to meet and listen to groups, including organisations such as the National Disability Authority which takes a different perspective from other delegations that have appeared before us.
We have received many diverse submissions on disability and the Disability Bill and it is important the joint committee takes time to examine them. I welcome the presentation and wish the National Disability Authority well in its work. Will we ever reach the point where we can audit progress on disability issues?
As cathaoirleach of South Dublin County Council in 1999, the same year the National Disability Authority was established, I carried out the work of my predecessors in south County Dublin. Councillors from across party boundaries tried their best to make improvements in the facilities and services available to disabled people. How much progress has been made in the intervening six years? Do we need to pause and audit progress to ascertain whether we have made progress or, instead, have been engaged in hype?
I meet many people who are affected in different ways by disability. Without being soppy about it, when I first moved to Tallaght for job reasons, a disabled lady came to work with us, which was almost unheard of in those days. Happily she is now a constituent of mine and I still keep in touch with her. She opened my eyes because of her attitude to work and how she coped with the lack of accessible toilet and other facilities. She had to travel to work in a taxi. I refer to some 30 years' ago. She helped me understand the difficulties she encountered. Can we really say we have made progress on this issue in 2005?
I accept a number of priorities exist, but does the authority have one main priority issue? As Deputy Lynch said, there is much discussion and interest in the Oireachtas in these issues, as there should be. I congratulate the authority on its work and wish it well.
I welcome the delegation and apologise for the delay and the rush, as everybody is running late.
My question relates to the Disability Bill. I recognise that it is not all one might like, given that the Government operates within a limited budget and provides services, rather than addressing people's rights. Does the authority believe that rather than have people seeking redress from the courts in terms of the provision of services, money should be front-loaded into service provision rather than coming from a rights-based perspective? I recognise that everything the authority is seeking is not being provided but I would be pleased to hear some of the good points about the Bill.
I also welcome the group and apologise to it on behalf of the committee for the long wait it had. What was said on behalf of the group was most interesting. This area is a priority issue with committee members.
The Department of Health and Children is the sponsoring Department but I do not see a reference to children, which would be a priority for me in the area of disability. What are the group's priorities in terms of children with disabilities? Taking into account developmental reasons it is important to look after children.
What changes would be envisaged in regard to FÁS community employment schemes in terms of disability? What are the current limitations? I am aware of some disabled people employed on community employment schemes who have no other work to do. They are put on the scrap heap when schemes end. I do not mean that in a disrespectful way but that is what it amounts to for people who would not otherwise be capable of finding employment. What are the group's views on that?
Ms Elliott
I thank members for their questions and welcoming us here today. This is the first time we have met and as part of our presentation we indicated we would like to be a resource for the work of the committee and to give an idea of the approach we are using to health work and the kinds of projects that will come up this year. We hope this will be the start of an ongoing relationship with the committee.
I will ask Ms Wilkinson to respond to the question on FÁS because she has a brief around further education, training and employment. Mr. Koornneef will respond to some of the standards questions because he is the senior standards officer within the NDA.
General questions were asked as well as specific ones on the social model of disability and whether that has been addressed within the Disability Bill. We have asked that our response to the Disability Bill should be circulated to committee members. It should be clear from that and from our presentation that we have significant concerns around not only the Disability Bill but the Comhairle (Amendment) Bill. We continue to stress the importance of paying attention to the Comhairle (Amendment) Bill because although the more substantial legislation is the Disability Bill, the former is key in terms of issues around advocacy, for example.
We thought Irish Sign Language would be included in the legislation. We have recommended 84 amendments to the Disability Bill and ten amendments to the Comhairle (Amendment) Bill. There is substantial concern about the legislation as currently constituted. We are entering into dialogue to clarify the intention of the proposed legislation and to see where there is a possibility of amending it.
In terms of progressing a social model of disability, we are concerned that a number of definitions of disability are used in various sections of the proposed legislation. We are also concerned that the definitions of disability are different from other definitions of disability used, for example, in equality legislation or the education Act that was passed last year. Clarity needs to be achieved around definition as this could lead to confusion. Our document contains much detail and I will refer to it rather than go through it point by point. I concur with the notion that there are concerns around the definition of disability and how much that feeds into a social and rights-based model of disability.
On Deputy Fiona O'Malley's point, we welcome some aspects of the Bill, not least its publication. The Disability Bill has been long awaited. We also welcome the fact that it has been contextualised as a national disability strategy. We also have the Comhairle (Amendment) Bill, the budget and the sectoral plans. They are very much to be welcomed and have been long awaited. It is important to recognise that and the work that has been done by the Government and a range of different partners in the endeavour.
Deputy O'Connor asked a question regarding progress around disability issues. We are conscious that next year will be the tenth anniversary of the report of the committee on the status of people with disabilities. It is timely to start looking at what progress has been made on its recommendations and to examine how the status of people with disabilities in society has changed in that period.
One of the issues the NDA is looking at is how much the goal of mainstreaming has been realised for people with disabilities. In that regard we have been looking at mainstreaming within particular sectors. We have not actually looked at the health sector but I would be interested in doing so. As we indicated in our presentation, some areas continue to be dealt with by other Departments for the general population such as housing, transport, further education, training and employment that are still located within the Department of Health and Children for people with disabilities. Many people with disabilities continue to receive their health services through specialist services in mental health and disability.
We have had discussions, for example with the national primary care task force as to what could be mainstreamed out of special services into primary care. A whole range of issues need to be looked at in terms of mainstreaming. At the same time it would be valuable to do an audit of progress. There has been a great deal of progress in terms of the Department of Justice, Equality and Law Reform. In 2004 it announced that the first study on disability in the history of Ireland will take place after the next census. That will generate a great deal of demographic information about people with disabilities. Significant shifts have taken place and we must value that as well.
On Deputy O'Connor's question on our priority issue, it is difficult to choose one given the complexity of health and disability issues. One of the key goals of the NDA is to promote leadership and partnership of people with disabilities. Many other changes will follow as a result of this. There is a need to promote user involvement and participation.
In response to the previous presentation, Deputy Lynch asked about patient representation on bodies. We still have a long way to go because such representation does not necessarily exist. However, we must stress the importance of promoting the involvement of people with disabilities in terms of negotiating the care they receive and their involvement in the strategic planning of services.
I have some comments on the work on standards. I understand that the standards guidelines were given to the Tánaiste and Minister for Health and Children, Deputy Harney, in October 2004. In response to a recent question by Deputy Ó Snodaigh in the House, the Minister indicated that once the Health Information and Quality Authority was established, it would have a role in the implementation and development of standards. It is welcome that the board of the interim Health Information and Quality Authority was announced by the Minister in January. This is an indication of progress.
Yes.
Ms Elliott
I appreciate what the Deputy stated about there being a sense of urgency amongst the constituent groups.
On the concern over a conflict of interest regarding the chair of the National Disability Authority being a service provider herself, we feel very confident that the work on the standards we are proposing, based on a substantial partnership with the Department of Health and Children, has involved all stakeholders. There have been very good contributions from the service providers, people with disabilities and their families, and the public. There is a sense that the standards are based on very substantial work of good quality by the National Disability Authority and the Department of Health and Children.
That is good because there is concern over the issue. Ms Elliott has probably heard that this is the case.
Ms Elliott
Yes.
Mr. Erik Koornneef
I do not believe I can add to what Ms Elliott has stated. We have gone through a very lengthy process and there is very genuine support from the stakeholders involved. It was very much a partnership process between the Department of Health and Children and the NDA. We are glad it is over and that we have arrived at our current position. More information is available on our website. I can circulate to members an outline of what has been happening since.
We would appreciate that for the simple reason that both this committee and the Department of Justice, Equality and Law Reform will overlap in their consideration of the legislation.
Yes. It would be very welcome.
Let us consider Deputy Cowley's point on the employment of people with disabilities and, more specifically, community employment schemes. In tandem with the report on health and children, which has been circulated, we conducted a study on further education, training and employment. Our study found that community employment is actually a very good option for people with disabilities, specifically for those with mental health difficulties or episodic conditions such as MS or epilepsy, who may not always work a full working week. If one considers the area of employment in its totality, one will note that young people with disabilities are leaving school without entering the world of work. Many supports are needed to allow them to make the transition from school to the workplace. Community employment is one of a range of options that should be made available to such people.
In addition to doing the aforementioned work, the authority is also considering the fact that 80% of disability is acquired. It is necessary for us to ascertain the experience of working people with disabilities in retaining work. We are introducing this to our work programme for this year. As Ms Elliott stated, we are using this opportunity to highlight some of the work we are doing. We would welcome another invitation from the committee to share further information.
Ms Elliott
On Deputy Cowley's question about children and the work the authority had been doing regarding this population group, we published Encouraging Voices, a book with sections on the experiences of children and young people with disabilities. It features a range of different perspectives. Its purpose is to afford children an opportunity to talk about their experience of education, family life, etc.
We have also been doing a lot of work in respect of the education legislation of last year. On foot of this, we will continue to monitor the implementation of the legislation in terms of the experiences of children and young people in the education system. To prepare for the national disability study and to try to promote good practice in disability research, the authority commissioned the children's research centre in Trinity College to develop guidelines on conducting research on children with disabilities. These are now available. We have been considering how the Disability Bill will work in conjunction with the education legislation. Our recognition of the importance of early intervention and assessment is very much reflected in our response to the legislation. We need to ensure that children who are either born with some form of impairment or who acquire an impairment or disability will receive services at an early stage and that their families will receive support.
We have been contributing to the national review of family support services last year and this year. This is to allow for a focus on the parents, siblings and significant others of young people with disabilities to determine how we can support the latter in their family lives. As I stated, much health work is topic-based, but it cuts across all age groups. For example, the report we will be issuing on oral health and disability will address the issue of children with oral health needs. It informs our work in a range of different ways. We also do very specific work, such as that on the education legislation and the research guidelines.
Mr. Koornneef
Reference was made to the auditing process. A key initiative of the National Disability Authority under the Programme for Prosperity and Fairness was a commitment to develop and monitor guidelines and develop an award for accessibility. The work in this regard is in progress and we have a number of staff working on it in partnership with the Department of Justice, Equality and Law Reform. Some very good work is being done, especially on guidelines for information and communication technology and guidelines for accessible buildings. These are all available from our office. It is a very worthwhile project from our perspective.
I am sure the delegates will agree that lifetime adaptable housing should be mainstreamed. None of us knows if he or she will become disabled but it happens to older people especially. It all fits into the same spectrum. Lifetime adaptable housing is a very practical application that should be part of housing legislation.
I thank Ms Elliott, Ms Wilkinson and Mr. Koornneef for enlightening us on the fundamental issues regarding the provision of disability services. This session has certainly been very informative and worthwhile and the delegates can rest assured that the committee will regard disability issues as a core priority. I apologise, as has the chairman, for holding up witnesses but matters ran on. I now propose that the committee adjourns until 9.30 a.m. on Thursday 3 March, when the Irish Wheelchair Association and the Disability Federation of Ireland will make presentations.
The joint committee adjourned at 12.20 p.m. until 9.30 a.m. on Thursday, 3 March, 2005.