JOINT COMMITTEE ON JUSTICE, EQUALITY, DEFENCE AND WOMEN’S RIGHTS debate -
Tuesday, 9 Nov 2004

Disability Bill 2004: Presentations.

Chairman

I welcome witnesses to the committee on the first of two days of hearings organised by the committee in response to a number of requests from interest groups on their concerns about the content and implications of the Disability Bill 2004.

I read some of the submissions made to the committee and was taken by the number of questions that arose which seemed to be pretty uniform across the board. One of these is the definition of disability, in respect of which there have been many recommendations. Questions about resources and practicability have also been raised as well as issues pertaining to the appeals process and whether it is cumbersome. Nonetheless, most of the submissions express a desire to move forward, although with some notable exceptions.

It is incumbent on all of us to try to improve the Bill during its passage through the Oireachtas. This is an opportunity to do so and, in that context, I am delighted that all the key players will appear before the committee today and next Tuesday to give us an insight into what the various groups feel about the Bill and help us make contributions and amendments as necessary. It is agreed that there is a need to move forward in the best manner possible. I hope that the interested parties, Oireachtas Members, the Minister and the senior civil servants who have framed the Bill can contribute to a process at the end of which we will have a Bill which, although not perfect, will represent a good step forward for the care of people with disabilities in Ireland.

A number of invitations were issued to interest groups and today we will hear from 15 organisations. The parties have already made written submissions to the committee, all of which I have read. Some seven minutes will be allocated to groups to highlight the main points of their submissions. They can take it that all submissions will be read by all the interested members of the committee and there will be no need to repeat all the issues in their submissions; they should focus on the most important issues within the seven minutes allocated.

I remind witnesses that while Members of the Oireachtas enjoy parliamentary privilege, this does not apply to them. I ask them not to cause us to end up in the Four Courts. I have been there before and I do not like it. I invite Ms Eibhlin Byrne, the chairperson of the National Council of Ageing and Mr. Robin Webster, the chief executive of Age Action, to introduce their colleagues and ask Ms Byrne to present her oral submission.

Ms Eibhlin Byrne

I am chairperson of the National Council on Ageing and Older People and I am accompanied this morning by Mr. Bob Carroll who is our chief executive.

Mr. Robin Webster

I am the chief executive of Age Action Ireland and my colleague is Mr. David Stratton, head of policy and research.

Ms Byrne

I thank the committee for its invitation to address the meeting this morning.

It is very important that, in addressing an issue such as the Disability Bill 2004, the voice of older people is heard. Members will note that the name of the body is the National Council on Ageing and Older People, which implies an active involvement in what is happening around us. Older people are increasingly involved in the decisions which affect their lives and disability is an issue which affects them greatly. As a society we say we are committed to allowing older people to age in comfort and in their own homes in so far as it is possible. This is a strong tenet of our health system and our social beliefs.

If we are to enable older people to age comfortably at home in their communities, we must show a certain respect to them by allowing them to have their wishes met. This adds great value to the communities in which they live. If people, through disability or any other reason, are forced to live away from their homes, they lose out as does our wider society. Therefore, in allowing people to live at home by giving them the support they require by means of the Disability Bill and otherwise, we are adding greatly to our society.

Ireland has an ageing society. Some 31% of the older population, aged 65 years or older, reported a disability. In other words, one third of older people stated a factor which caused them difficulties in staying at home. These issues must be addressed if we are to allow people to remain at home. Some 41% of the disabled population are aged 65 years or older which means a large percentage of people require help with housing, care, social help and so on. We do not yet have a great deal of data on ageing and the effects of preventable chronic diseases such as diabetes but it is clear that preventative medicine will help greatly. Encouraging people to have active and healthy lifestyles will help but it will not solve all the problems as there will always be people who will require help. This must be underpinned by legislation. There is no point in making statements to the effect that we are committed to these issues unless we are committed to enshrining them in legislation. This is why I welcome the Disability Bill. I will now hand over to Mr. Carroll.

Mr. Bob Carroll

I wish to emphasise the interface between ageing and disability. As well as people who become disabled in later life through illness or injury, there are those who will grow old with an existing disability. The ageing process for such people has been called the second disablement. The special needs of people with early onset dementia are examined in the council publication, An Action Plan for Dementia, in particular, the significant proportion of people with Down's syndrome who develop dementia in their 30s and 40s. Older adults with an early onset disability can fall between disability and old age services. The importance of equity must be stressed in the treatment of all people with disability, whether they are young, older adult or over 65 years. Age should not be a factor in deciding who should be assessed and what services should be provided.

The Disability Bill 2004 applies generally to people with disabilities without age distinction. However, it includes a provision in section 1(3) that the assessment of needs arrangements may be brought into effect at different times for people of different ages. This might suggest to some that provisions may be delayed for older people with disabilities. The National Council on Ageing and Older People believes that discrimination in the provision of the assessment services on the basis of age would not be consistent with equality legislation.

We have a number of other concerns about the Disability Bill, for example, the definition of disability. The council notes that the definition of disability in Part 1, section 2 (1) and the reference thereto in Part 2, section 6 (2) is potentially restrictive for older disabled persons who are less likely to otherwise have the capacity "to carry on a profession, business or occupation in the State". As already noted, disability is defined in the census in terms of functional capacity. The definition in the Bill is very stringent in regard to functional capacity. Section 6 (2) states:

"substantial restriction" shall be construed, for the purposes of this Part, as meaning a restriction which is permanent or likely to be permanent, results in a significant difficulty in communication, learning or mobility and gives rise to a need for services to be provided to the person continually.

How this subsection is interpreted will be critical because the interpretation will determine whether a person has the right to access assessment or not.

Chairman

There is only one minute remaining.

Mr. Carroll

I will skip over the points relating to finance.

Service planning and provision begins with assessment. The council believes that if the assessment process is correct and the results are acted on, national social policy objectives relating to older people and disabled people will be achieved. The council favours a standardised comprehensive approach to assessing the medical, social, psychological and financial circumstances of older people taking into account the older person's needs, preferences and abilities. The council has listed a series of questions on the assessment provision in its submission.

The administrative framework as a whole is potentially cumbersome and contentious, with its provision for liaison, complaints, mediation and inquiry officers. It is questionable whether services for disabled persons of all ages have the capacity to respond promptly to the sudden onset of disability and to the ensuing crises for the individuals concerned and their families.

While the Disability Bill provides a right to an assessment of need, this does not confer a right to services. This is contingent on an adjudication in a service statement which must not only have regard to the assessment report, but also to a number of conditions, which are listed in the council's submission.

Chairman

Mr. Carroll will have an opportunity to make further points during the question and answer session.

Mr. Webster

Age Action Ireland thanks the joint committee for the invitation to make a presentation.

We certainly agree with the Chairman that being involved in improving the Bill requires a longer process than one presentation. I support the points made by the National Council on Ageing and Older People. We are concerned with ageing and older people and solidarity with the disability sector and people with disabilities.

For too long disability and ageing were seen as separate issues and at a policy and service level, we want a life course view of people with disabilities and the development of services to meet this view. We want to break down barriers, which Mr. Bob Carroll mentioned, on compartmentalising services.

Life expectancy is slowly increasing for the general population. Although our level is lower than many other countries in the OECD, the life expectancy of people with disabilities has increased dramatically. To reinforce the point made by Mr. Bob Carroll, as people grow older the prevalence of disability becomes greater. People with disabilities are living longer and must deal not only with the ageing process but with lifelong disabilities. We need to examine how these two issues are dealt with.

We raised a number of questions on the legislation. We are concerned that the definition of "disability" is restrictive. Older people could not argue the case on the lack of functional capacity, but if an older person suffers a stroke, or has a fall, he or she will have a disability for a short time. It seems to be completely restrictive and unnecessary to exclude them from an assessment of need. The use of the word "cumbersome" to describe the appeals and complaints system is quite generous. It needs to be clarified. We share the disappointment of others in the Bill because we thought it would introduce legal rights so that older people and people with disabilities would have a clear view of their rights and what they could expect. Some of the provisions in the Bill for resources do not need to be made by an Act of Parliament but by Government decision. We are concerned that during the course of the debate on the Bill people's rights are clearly stated and resources that will provide the services to meet the needs are clearly put in place. If there is a mismatch between needs and resources for the services, there should be a clear system of appeal or complaint and this should be backed up by a much clearer and proactive process.

Chairman

Members may now put questions to the delegation from the National Council on Ageing and Older People and Age Action Ireland. We will bank the questions and then I will call on Mr. Carroll, Mr. Webster, Ms Byrne or Mr. Stratton to answer them. I call Deputy Stanton, the Fine Gael spokesperson on disability.

Deputy Stanton

I commend the Chairman on fulfilling his promise to the Dáil on this initiative.

I welcome the delegates and thank them for the work put into their submissions.

Both Mr. Carroll and Mr. Webster commented on the very restrictive definition of disability. Has either delegate a suggestion on how to improve it, and if so, will he give it to the committee? I will put that question to every group appearing before us. It has been suggested that under the provisions of the Bill there is a right to an assessment but some of us dispute that. Section 5 seems to suggest that all services, including assessment, will be dictated by the availability of resources. If that is the case, would the delegates agree that this implies an assessment of need is not a right? Will the delegates reconsider this and come back to us on it?

Section 1(3) provides for the commencement of services for different people, depending on age, at different times. I was alerted to this point, which gives rise to concern, only this morning and this should be taken out of the Bill.

Chairman

I thank Deputy Stanton for his very precise questions. Each member will have an opportunity to wrap up at the end of the session when he or she can comment on the Bill. At this point, it would be appreciated if members confine themselves to questions, as Deputy Stanton has done. I call Deputy Kathleen Lynch, the Labour Party spokesperson on disability.

Deputy Lynch

I will be brief. I welcome the groups. Deputy Stanton referred to the definition of disability in the Disability Bill as it relates to elderly people. It states that a disability is something that restricts one's participation in various aspects of life, in which clearly the elderly would not be participating in any event. Could the witness comment on that?

Chairman

Deputy Máire Hoctor is the Fianna Fáil Government convenor on the committee.

Deputy Hoctor

I too welcome the groups. My question is for Mr. Webster. Mr. Webster mentioned that in the past disability and ageing were seen as separate entities in policy making and that services were compartmentalised. Will he elaborate on that and tell the committee how he sees the Disability Bill addressing this?

Chairman

Senator Tony Kett is the Fianna Fáil spokesperson on disability.

Senator Kett

I also welcome the groups and thank them for their presentations. They are right that changing the perception of disability as it applies to the ageing population is most definitely an uphill battle. As a people we have generally equated ageing with geriatric ailments and have not seen them as being in the realm of disability. We need to change our thinking in that regard. I wish the groups well and the committee will support them in whatever way it can in doing that.

As the Chairman said, the definition of disability poses problems for everybody. The consensus is that it is too narrow. If it is too narrow, what set of qualifying words should we consider putting in place? It will not be possible to name every disability that exists. If we tried to do that we would inevitably omit some of them. Given that likelihood, what set of qualifying words would the groups suggest to encapsulate the definition of disability?

Chairman

Deputy Finian McGrath has a special interest in disability.

Deputy F. McGrath

I too welcome the National Council on Ageing and Older People and commend its work. Much of the research and work in which it is engaged has brought issues concerning elderly people to the top of the political agenda.

I have three questions on the elderly and disability. The council states that there are approximately 436,000 people aged 65 years and over, approximately 11% of whom have some form of disability. That means there are approximately 40,000 people among the elderly who have a disability. Is that figure correct?

The council also states that it is concerned about the definition of disability, finance, the scope of assessment and that it has other concerns. Does it believe this Bill has teeth or can make a major difference and have a positive impact on the lives of elderly people with disabilities?

The council also states that 64.5% of elderly people earn less than €320 per week. In 2004 that is a disgrace and we must face up to this blatant neglect. What is the basis of that figure?

On the broader issues concerning elderly people with disabilities and role of the wider society, we can introduce all the legislation we want, but if society does not change its attitude to elderly people it will not matter. There is a major problem at the moment. Many of our elderly people do not have the same supports and human contact as they did in Ireland 20 years ago. Is that the perception of groups working with the elderly?

Chairman

Deputy Aengus Ó Snodaigh is the Sinn Féin spokesperson on justice and disability.

Deputy Ó Snodaigh

I apologise for being late. There are two definitions of disability. Which is the preferred definition, the one contained in the equality legislation or the definition in Disability Bill?

There has been some demand for a separate Minister with responsibility for disability. How is it envisaged that such a ministry would work? What role is envisaged for the National Disability Authority or the Equality Authority when this Bill is passed?

Chairman

There are some questions that can be grouped together. I will start with Age Action this time.

Mr. Webster

On the first question that was directed to us, some examples of the ill effects of compartmentalisation were given by Mr. Carroll. The Alzheimer Society of Ireland has often said it is a serious mistake to get dementia before the age of 65, simply because the system cannot cope with that. Like the National Council on Ageing and Older People, we are concerned with the ageing process. The whole society is ageing, but people with disabilities are ageing even faster and living longer. We therefore need to revolutionise our thinking.

It seems quite unacceptable that we divide the ageing population into different age groups. When we have an ageing population we need to consider the impact of ageing on all groups. Therefore we want a seamless life course view. We say that the rights of people with disability under the age of 18 are just as important as those of people aged 65 years. We should take that life course view. That is critical. Otherwise there will be hierarchies of disadvantage. That has happened in the past. If there are no rights people must make quite difficult decisions about priorities and the allocation of resources based on some groups being more or less important than others. That is what we want to try to move away from.

Mr. Carroll

I shall put it in a slightly different way. We have a policy on ageing for older people which dates back to 1988. That policy is to enable older people to live at home for as long possible and, if that is not possible, to restore those older people who become ill or dependent to independence at home, to encourage and support the care of the elderly in their own community by family, neighbours and voluntary bodies in every way possible and to provide a high quality of hospital and residential care for elderly people when they can no longer be maintained in dignity and independence at home.

We do not want that to become a different set of aims. We want these aims to be integrated with what is going on at the moment. It is critical that the need of older people to retain their independence and the need of disabled people to retain their independence are equal. While we would like to take the time to come up with another definition that might be more amenable to our considerations, those would be the principles we want to maintain.

Chairman

It would be appreciated if the delegation would come back with that definition as people would like to have the basis for amendments. Part of the whole process here is to allow Members of the Oireachtas to have a broader understanding of what changes to the Bill are necessary so that it can be debated in the House. I thank the delegation for its contribution.

Mr. David Stratton

Getting the wording right is something we will have to come back to. It is tied in with the issue of needs assessment. When one is assessed regarding a need it is decided whether one falls within a definition. Somebody else decides that, but people have the right to apply for an assessment. Anyone can apply, therefore, regardless of whether people assess themselves in terms of the disability. It should be as inclusive as possible to allow the greatest number of people to apply to have an assessment done, rather than exclude them from the beginning.

When one reads the Bill as a whole, it is not clear that it includes older people, given the history of the compartmentalising of services. The section referred to, section 1(3), probably refers to children. It could be construed as including older people as well, but it is not clear. It is important to have a definition that is as inclusive as possible, not one that excludes people from the outset.

Chairman

Does the Bill include an assessment of whether somebody is disabled, according to the definition of the Bill?

Mr. Stratton

When people apply for an assessment they will be assessed on whether they fit the criteria. The two are combined in that sense.

Chairman

Yes. There is an opportunity to be assessed irrespective of whether they fit the criteria.

Deputy Lynch

There is no opportunity.

Chairman

We will come back to that. Does anybody want to make a final comment?

Ms Byrne

I will make one or two comments. I would be opposed to a Minister for disability because disability is a part of every life. It is a part of education, social welfare and so on and it is not a good idea, just as I do not agree that those who are ageing should be separate from the population. We are an entire society and everything should be viewed in a holistic way.

In terms of assessment, we would argue for a care and case approach. That should involve social aspects as well as health because it is not simply a matter of whether one can look after oneself; it is whether one can become involved in one's community etc. A broad assessment is important. This is a right. We are not talking about vulnerable people. These are citizens and we need to guarantee them their rights; assessment should involve that.

The ability to participate should not be just on an economic level but on a social level. The speaker earlier was right. There is a high degree of isolation and poverty among older people, particularly among older women. I will ensure Deputy McGrath gets a copy of our SLÁN report in which he will find all the documentation on those issues.

Chairman

I thank the representatives from Age Action and the National Council on Ageing and Older People, Eibhlin Byrne, Bob Carroll, David Stratton and Robin Webster, for coming before the committee. If they want to make remarks at the conclusion of the meeting, there will be an opportunity to do so.

We will now move on to the disability legislative consultative group, which had a huge input into the Bill and consulted with the Minister and the officials thereon. We also have representatives from the National Disability Authority. I remind witnesses that while Members of the Oireachtas enjoy parliamentary privilege, that same privilege does not apply to them. Dr. Angela Kerins is involved with both the National Disability Authority and the DLCG. I call on her to introduce her colleagues.

Dr. Angela Kerins

On behalf of the DLCG, I thank you, Chairman, for the opportunity of presenting here today. My colleague, Mary Keogh, will be presenting with me on behalf of the DLCG and we will both present wearing different hats later.

Chairman

Ms Keogh, you are very welcome. You are a regular attender at these meetings.

Dr. Kerins

We have had a poor historical record in this area. We must acknowledge that many improvements have been made in regard to services for people with disabilities, but we have a long way to go to ensure that people with disabilities can access the same rights and opportunities as everybody else.

To set the background, we had a report from the Commission on the Status of People with Disabilities in 1996 which set out clearly the needs and wishes of people with disabilities. As everyone knows, a Disability Bill was published in 2001 and the NDA was asked to establish the disability legislation consultation group to consult with Government on the content of the new disability Bill. The DLCG, chaired by the NDA, is made up of eight umbrella organisations, and they include the Disability Federation of Ireland, the Forum of People with Disabilities, Mental Health Ireland, NAMHI, the National Parents and Siblings Alliance, the National Federation of Voluntary Bodies, the Not for Profit Association and People with Disabilities in Ireland. These groups together represent over 507 disability organisations and many thousands of people with disabilities. The DLCG, as a number of members will be aware, produced a document which we can provide for those members who do not have it. That document was called Equal Citizens and it set out clearly the core elements we required in the new disability Bill.

As you said, Chairman, we met with the then Minister of State, Deputy O'Dea, and the Minister of State, Deputy Fahey. We have also met with the Taoiseach and many others. Prior to and post the publication of the Bill the DLCG has taken its own legal advice on the contents of the Bill to which we produced a response. That is the document now before members. We last met with the Minister of State, Deputy Fahey, on 27 October and at that meeting we stated that we wished to continue our engagement with the Minister and his officials to address what we saw as the fundamental flaws we identified in the Bill. I take this opportunity to address the ten key issues of concern to members of the DLCG, following which I will hand over to Ms Keogh who will conclude our presentation.

As the committee has already heard, the definitions of disability — there are a number of them in the Bill — are too narrow. We are concerned about the use of such terms as "substantial restriction" and "enduring". We are also concerned that the definition excludes episodic conditions, people with mental health problems, for instance, and it also excludes early intervention needs, which could prevent substantial restriction.

The second issue we are concerned about is that we want to see the Bill provide a clear right to an independent assessment of need. That right is not set out clearly in the Bill. We were promised by all concerned, including the Taoiseach, that the Bill would contain a clear right for people with disabilities to an independent assessment of need.

The third point is that the Bill must provide for an individual's right to progressivity on their unmet needs identified in the independent assessment report. We believe this must be done minimally, annually or whenever there is a change in circumstances for the individual.

The complaints system is far too complex. It needs to be simplified and made more accessible to people with disabilities and their families. We believe the appeals system should be independent of the Department of Health and Children and we would like this office sited in another Department.

We want the Bill to provide, and again there is lack of clarity in this regard, clear ring-fencing of disability-specific resources. The Bill must also provide for a clear statutory duty on all Departments and public bodies to include people with disabilities in their plans and services, with appropriate monitoring and accountability.

The public services should include all public services provided in the public system by statutory or non-statutory entities. Also, the sectoral plan section of the Bill does not take account of the wider needs of people with disabilities. For example, the Department of the Environment, Heritage and Local Government has not addressed the housing needs.

Clarity is needed on the impact of the Disability Bill, particularly on section 14 of the Equal Status Act, because there may be a dilution of the whole issue of reasonable accommodation provision. Also, there should be a review of the legislation following a three year period. I will now hand over to Ms Keogh.

Ms Mary Keogh

I will focus in particular on what the DLCG examined from a mainstreaming point of view. In terms of the legislation, there were duties and requirements on public and private bodies providing services in the public. Those duties and requirements should be aimed at removing barriers to full participation of disabled people in society.

We also asked that the Bill would address the requirements of disabled people through prioritising mainstream approaches while also allowing for specific individualised supports where required. The analysis to date on that indicates that the mainstreaming element is quite worrying in terms of what is contained in the Bill. Dr. Kerins alluded to section 14 of the Equal Status Act. There is serious concern about the synergy between the proposed Disability Bill and our current anti-discrimination legislation within the Equal Status Act. Some provisions of the Bill could reduce the protection for disabled people under the concept of reasonable accommodation included under the Equal Status Act. This would further reduce disabled people's rights, which is of serious concern.

Dr. Kerins outlined the context of role of the DLCG. It has been in operation for two years and has put considerable time, effort and energy into consulting disabled people throughout the country and organisations or member organisations on what should be delivered in this Bill. We worked in good faith and expected good faith in return in terms of the equal citizens document we have delivered. As Dr. Kerins pointed out, we met the Minister of State, Deputy Fahey, and outlined fundamental flaws in the legislation, but we are still awaiting his response. That is the DLCG's position on this matter. I reiterate there are serious concerns about fundamental flaws in the legislation.

Chairman

While Dr. Kerins spoke on behalf of the National Disability Authority, does Ms O'Connor also wish to contribute?

Dr. Kerins

I wish to clarify that in my position as chair of the National Disability Authority I am also the chair of the Disability Legislation Consultation Group. I will speak on behalf of the authority and then pass over to Ms Claire O'Connor, the director of the authority.

The NDA welcomes the publication of the national disability strategy on 21 September and looks forward to working with the legislators and all stakeholders to improve it. We will propose amendments to strengthen the Disability Bill, the Comhairle (Amendment) Bill and the operation of the sectoral plans. Our recommendations are rooted in the wide experience we have gathered in consultation with the sector.

Our submission proposes 30 recommendations which are contextualised in the executive summary. In section 9 of the executive summary we propose 96 amendments to the Disability Bill and the Comhairle (Amendment) Bill. I will deal with Parts 1 and 2 of the Disability Bill in regard to the NDA. Part 1 deals with preliminary and general aspects. Our first concern was around the definition of disability and the possibility that the definition, when amended in Part 2, may have the effect of excluding named groups who are clearly targeted but may be excluded. We have four recommendations on this Part, but the issue of resources and timeframes is repeated throughout the remaining Parts. Our first recommendation is that the sponsors of this legislation should be asked to reflect on the wording of that definition in Part 1, as amended in Part 2, to ensure the inclusion of people with intermittent — episodic — disabilities, people with mental health difficulties, people with disabilities acquired through ageing, people with disabilities with no confirmed medical diagnosis but with recognised developmental delays in reaching expected milestones and to provide for early intervention to prevent substantial restriction, for example, children with language disorders or dyslexia. Our second concern is the interpretation of the wording around resources. Our second recommendation relates to Part 1, section 5 and should be reviewed to ensure the ring fencing of the necessary resources for the implementation of the Bill. Our third recommendation is to amend the definition of public body to include any body, organisation or group funded wholly or partially by a Minister and of a standing prescribed by the Minister. Our fourth recommendation is that a timeframe for the review of the legislation should be included.

In regard to Part 2, our fifth recommendation proposes that there is a need for specific timeframes to be included in the legislation for all stages of assessment, service statements, complaints and appeals mechanisms. Our sixth recommendation proposes that a critical issue that needs to be addressed in the legislation is in regard to the assessment of need and quantum of service. While this is provided for at an aggregate level, it is vital that an individual's unmet needs are reviewed annually and that there is some progressivity for the person. This is an issue that is very dear to our hearts, namely, that a person has some degree of assurance that his or her needs will be met within timeframes.

Our seventh recommendation proposes that in order to have a transparent and independent appeals system, this function should be vested in the Minister for Finance similar to the appointment of the Ombudsman. The eighth recommendation provides that while the primary focus of assessment is on the areas of health and education, provision should be made in the legislation for linkages to other Departments and their agencies, particularly regarding assessment of need in key areas such as transport and housing. This needs to be further addressed in Part 3 sections 29 to 35, inclusive, in terms of sectoral plans and the provision of cross-cutting mechanisms for effective interdepartmental working.

Our ninth recommendation is that provision needs to be made in legislation for a mechanism to ensure co-operation between the Departments of Health and Children and Education and Science; Part 2, section 6(3) refers. The reciprocal provisions regarding co-ordination between the Education for Persons with Special Educational Needs Act 2004 and the Disability Bill 2004 should be equally binding on both parties and not subject to a single departmental override. The tenth recommendation relates to standards referred to in Part 2 section 9. There should be a requirement for the NDA to be proactively included in the development of the HIQA standards for the needs assessment and service statements.

The 11th recommendation relates to a review of eligibility in regard to Part 2 section 12. When the assessment of need and service statements system is set up, there should be some review of caseload. This can be related to an international benchmarking of disability support services as a proportion of people on the disability database or as a proportion of the total population at large. This review clause should be set out in disability legislation. I will pass over to my colleague, Ms O'Connor.

Ms Claire O’Connor

I will cover recommendations to Parts 3 to 5, inclusive, but I will not name each section covered. We have made four recommendations to the Comhairle (Amendment) Bill. I will talk about the role of the NDA going forward. If I was to highlight one concern that emerged in all our consultations, it would be the naming of individual officers in regard to the assessment procedure and whether they are authorised officers as opposed to substantive posts. There are two recommendations, namely Nos. 11 and 25, in that respect which I will deal with together. We propose that the NDA benchmark the service that is put in place relative to the caseload. The second recommendation is that we would track on aggregate in the NDA's annual report the number of complaints formally raised, the number informally resolved and the number referred to the appeals officers. Over time that would give us a fix on whether the resources being put in place to carry out the needs assessment — we could flag what the service requirements would be — were appropriate for the population targeted under the Bill.

Part 3 covers access to buildings, services and the sectoral plans. We are keen to ensure the sectoral plans do not take from the existing commitments under the strategic management initiative. There is a requirement for equality disability proofing under that initiative. We do not want to dilute the impact of disability proofing under the initiative. To the extent that sectoral plans offer an opportunity to highlight activity in this area, we welcome them, but we would be guarded about the way sectoral plans are evolving. We would also like them to be tightened up. Recommendation No. 14 proposes a common template for sectoral plans. Recommendation No. 15 proposes better processes for interdepartmental working. This is an area that surfaced during the negotiations on the Education for Persons with Special Educational Needs Act 2004.

Part 4 relates to genetic testing. The consultation with family members, parents and carers was overlooked. The NDA is very committed to parents and carers being involved in that area.

Part 5 relates to the public service employment criteria, in respect of which we make six recommendations. We are concerned to ensure that at a minimum the 3% employment target is kept. There is possibly provision for dilution of that target if a Minister was to put forward a specific tailored employment proposal which might move away from the 3% quota. At a minimum, that percentage should be held. Recommendation No. 21 indicates that here are no mandatory penalties for non-compliance. The rigour of the enforcement of the sectoral plans is quite weak and we make recommendations about where that can be improved.

Part 6 relates to the centre for excellence in universal design. Rather than it being supplementary or complementary to the role of the NDA, we propose it should be integrated into its core functions. Therefore, rather than being altruistic or a goodwill gesture, the centre of excellence would become part of the NDA's core work in developing and promulgating standards, drafting codes of practice, implementing a universal design and monitoring and making reports.

Part 7, dealing with miscellaneous provisions, affects the area of governance in the NDA, changes the numbers on the board and so on. We recommend a new role for the NDA in regard to tracking complaints and complaints procedures. Its information content for the entire sector would be incredibly useful. In its monitoring role, the NDA should comment independently on aggregate unmet need and the progression in aggregate for the entire sector.

With regard to the Comhairle (Amendment) Bill, the NDA asks that social services be broadened to include transport and access. The NDA still emphasises the need for holistic needs assessment. The advocacy service proposed in the Comhairle (Amendment) Bill is quite narrow. We suggest a broader advocacy service is needed and that this should be addressed during the passage of the Bill. Independence issues arise in regard to the Disability Bill, which reinforces the point that advocates must be independent of service providers and independent in carrying out their functions.

Chairman

I thank the disability legislative consultative group and the National Disability Authority for their substantial, informative and clear comments on the Bill, which raised a number of questions for the members of the committee. For the benefit of members who arrived at the committee recently, at the previous committee session with Age Action and the National Council on Ageing and Older People the precedent was set that only brief questions are asked. There will be an opportunity at the end of this session for each member to comment on the Bill. However, at this time, I ask that members content themselves with pertinent, short questions.

Deputy Stanton

I thank the witnesses for their submissions. Do they think it is clear in the Bill that to have an assessment is a right? When the representatives of the DLCG stated the Bill must provide a clear assessment, this implied it is not clear in the Bill.

As some 84 complex amendments have been proposed by the NDA, it obviously feels the Bill is flawed. Is it capable of being amended? Having considered the amendments, they are extremely complex. It begs the question as to the type of consultation taking place for the past two years if the national body, the NDA, feels strongly that substantial amendments must be brought forward. Do the witnesses have a view on the number of assessment officers needed and their qualifications?

Deputy Lynch

I welcome the two groups. I recently read of the background of the DCLG and why it was set up. At this stage, do the representatives of the DCLG believe that anyone listened over the two year period? I am surprised the group is still involved in this process if it has so many concerns with the Bill. The group was in consultation for two years. Did anyone listen to the group, are any of the measures it sought contained in Bill and are any of the measures in the Bill worthwhile?

Deputy Hoctor

The representatives of the NDA stated they want responsibility for the appeals system removed from the Department of Health and Children and moved to another Department. However, it was not stated to where the authority would like it moved. Will the NDA clarify this and state its reasons for ruling out the Department of Health and Children, which seems the natural Department to have responsibility for the system.

Senator Kett

Given a narrow interpretation of "substantial restriction" as it operates in practice, Dr. Kerins stated that people in wheelchairs, who suffer substantial restriction, might be omitted. In what context might this happen? To take an example, a person in a wheelchair might be able to travel to his or her place of employment and do all that an able-bodied person can do. Assuming, for the sake of argument, that this person has a car which he or she received under the aegis of the Irish Wheelchair Association, the person received this car because he or she is disabled. Therefore, that person would be able to operate in every facet of life yet would still be deemed disabled. Would such a person be ruled out? I am not sure whether the assessment officer has an element of flexibility in making a decision.

With regard to public services, Dr. Kerins stated that all public bodies should be considered in terms of conforming. Would it be better if the public bodies we know, rather than voluntary organisations, were in receipt of public funds? Would it be better to get the main structure of this correct before moving on to smaller bodies such as voluntary organisations and other organisations which receive State funding in one guise or another?

There was a reference to independent assessment rather than assessment. I take this to mean that somebody outside the Department of Health and Children or somebody not paid by a State-sponsored body would carry out an independent assessment. However, this might prove impossible.

Chairman

The question is: what is independent?

Senator Kett

No matter how hard one tries, it will be difficult to find somebody who is totally independent in this regard.

Deputy F. McGrath

With regard to section 1 which deals with definitions of disability, it was stated that line 4 excludes early intervention needs. What does this mean? With regard to section 4, it was stated that the complaints system is too complex and needs to be clarified and made more easily accessible. Will the witnesses expand on this? With regard to section 8 which deals with public services, it was stated that the Department of the Environment, Heritage and Local Government has not addressed housing needs for people with disabilities. Can this be clarified?

Ms Keogh referred to serious flaws in the Bill. Can these flaws be amended given that some think they cannot be? Ms Keogh stated she had discussions with more than 500 disability groups. Did the groups share her major concerns on these issues?

Deputy Ó Snodaigh

Did either group consider whether the section 75 legislation in the Six Counties would be a better model in terms of the sectoral plans? Do the two groups have a view on whether there should be a minister for disability? While Dr. Kerins referred to this, how does the DLCG view the future role of the NDA?

Deputy P. Power

I have two questions for Ms Claire O'Connor. I did not understand a point in the preamble to her presentation when she referred to the naming of the individual officers in the health agency. Ms O'Connor made a point concerning whether there would be new officers or whether existing officers would be named. Will she elaborate on that point? The performance of the functions of these officers under the Act is central to the operation of the Bill.

My second question relates to the comments concerning the Comhairle (Amendment) Bill. The provision of advocacy services is central to the proper operation of the Bill, with people hopefully being able to access benefits provided for in the Bill. It was said that the legislation needs to be broader, but to what extent do the services need to be broader? My feeling is that no matter how many rights are in the Bill — some people contend there are different types and categories of rights — it seems that many people are unable to access or articulate their need for those services. In that respect, the successful operation of the Comhairle Bill is critical.

Chairman

Do the delegates accept the bona fides of the various Ministers and their officials in their attempt to improve the situation through the Disability Bill? Imperfect as it is, and taking into account that the delegates have suggested a huge number of amendments, is it still a step in the right direction?

Deputy Lynch

Dr. Kerins does not have privilege.

Dr. Kerins

I thank Deputy Lynch for pointing that out. To answer the questions posed by Deputies Lynch and Stanton as regards where we are — Ms Keogh spoke about this earlier — we have been working on this matter for years. Many others have been at it before us for even more years, trying to get the best possible deal and equality of opportunity and rights for people with disability. It goes back a long way and we will certainly be pushing forward on it and will not tire of doing so.

The agreed position of the DLCG is that, following publication of the Bill, we wish to continue our engagement with the Minister to address these fundamental flaws. I want to be clear that the DLCG's ten points are fundamental, so we want to see significant movement on them. If that significant movement occurs there will certainly be quite a bit of progress on the Bill. I hope that answers the question.

As regards the Chairman's query, we would certainly not question people's bona fides. As well as ourselves, people with disabilities, their families and different organisations have put an awful lot into it. We also recognise that much work has gone into this Bill from various officials, particularly those from the Department of Justice, Equality and Law Reform, as well as the Ministers. While much has been done, there is an awful lot more to do but we would certainly not question people's bona fides. If we can get the DLCG's ten points significantly addressed we believe there will be significant progress.

Deputy Lynch

What if that does not happen?

Chairman

There are plenty of other questions that have to be answered.

Dr. Kerins

To answer that one, we expect to meet the Minister of State, Deputy Fahey, to hear his response to that. We will wait until we have had that meeting before we respond further on that point.

Chairman

The Minister of State indicated to you that he would respond.

Dr. Kerins

He did, yes, and we have also had a promise from the Taoiseach that he will meet with the DLCG. We have put in the request and the documentation and we are waiting for an early meeting with the Minister of State and his officials about those key areas. In the letter you and your colleagues have, Chairman, we have specifically outlined ten issues we need to see addressed. Although we have sent in a comprehensive document, those ten issues are critically important to the DLCG.

Deputy Hoctor referred to the appeals system. In its document, the DLCG is clear about the equality of citizens concerning appeals. However, the fundamental issue is that the appeals system must be independent of the providing Department. The National Disability Authority's submission contains a recommendation that it should be based in the Department of Finance, as with the Ombudsman. The Disability Legislation Consultation Group wants to see it in a Department other than the Department of Health and Children. We believe that would fundamentally underline the independence of that office.

Senator Kett asked about the definition of substantial restriction and used the example of wheelchair users. We are concerned that this definition would represent a substantial restriction on the right to a needs assessment. While a person may not have needs to be addressed in one area, they might have significant needs in another area. We are, therefore, concerned that the "substantial restriction" definition might prevent somebody from getting in line to have a needs assessment done. One of my colleagues will address this point for the committee later.

The DLCG, which comprises 507 voluntary organisation, also made a recommendation regarding public bodies and the voluntary organisations. The Bill should be all encompassing as regards public services.

Chairman

May I invite Ms Mary Keogh to speak at this point?

Ms Keogh

To be clear, the Government got it wrong the last time when it published the Disabilities Bill. Currently, we seem to be in the same waters. The DLCG has made its response to the Minister of State, Deputy Fahey, and we are currently waiting in good faith to hear that response. The question was posed as to whether it was possible to amend the legislation but, unfortunately, I do not work as a parliamentary draftsman, so I cannot answer that question. However, the fundamental flaws that have been outlined are the bottom line in terms of the significant changes that need to be made to this legislation.

Deputy Finian McGrath asked about consensus views. The DLCG was established by the Government as representing the consensus views of the disability sector, which answers the question. I urge that the mistakes of the past should not be repeated, which could easily happen with this Bill if the DLCG is not listened to.

Ms O’Connor

I was asked to clarify whether the posts of assessment, liaison, complaints and appeals officers were substantive. The checks and balances that the National Disability Authority is recommending, in points 11 and 25, are to review the case load against the health research board's database, so one would have compass points to indicate whether these are serious and significant commitments to doing the job properly. It is not a criticism but it is a matter of fact that we have had disability access officers named in the Department of the Environment and Local Government but they were not resourced for specific tasks. We wanted to cover that point quickly, therefore, and not go through a fiction.

There is a two-part test for eligibility for advocacy services in Comhairle — one must qualify under the definition of disability and must be at risk. That is narrowing the offering of advocacy services to a point where many people will just not be eligible. The mainstream activity of Comhairle is advocacy to include people with disability, so they cannot find they are excluded in the legislation that is specifically addressing their needs. It is nearly a circular argument so we require clarification in that respect.

The information and advocacy service that Comhairle provides is to access all public services, so we want it to be broader than disability services, to include transport and other social services.

Chairman

Thank you, Ms O'Connor. I hope you will be able to stay until the end of the meeting. For Deputy Lynch's information, we will come back to this again at the conclusion of the meeting.

We will now hear from the following groups: NAHMI, the Forum of People with Disabilities, People with Disabilities in Ireland, Rehab Group and the National Federation of Voluntary Bodies. I ask the representatives to keep their contributions as concise as possible, with an absolute maximum of seven minutes, because there are a number of groups and it will allow for more time for questions and answers, which seem more beneficial. I can assure the groups that their written submissions are read. They can take that for granted.

NAHMI is now the National Association for the Intellectually Disabled of Ireland. Ms Deirdre Carroll is the general secretary of NAHMI.

Ms Deirdre Carroll

We are in the process of a name change. To clarify, the MH used stand for mental handicap, which is no longer acceptable to many of our members. I will divide my time with Ms Frieda Finlay, who is our honorary public relations officer and a parent of an adult with an intellectual disability.

The Disability Bill 2004 falls far short of expectations. NAHMI has studied the Bill over the past six weeks and is bitterly disappointed with the final outcome. After almost three years of consultation we had hoped for more. In its present state the Bill will need major and significant amendments if it is to be workable. This is not an enabling Bill. It is weighted against the person with a disability from the start, with a particularly restrictive definition of disability.

NAMHI, which is a member of the Disability Legislation Consultative Group, DLCG, set up by the Government, supports the significant concerns about the Bill that have been expressed here earlier today. Our concerns centre around the definition of disability used, the complaints and appeals mechanism, enforcement, redress and mainstreaming. The sectoral plans outlined by the six Departments are so vague they are rendered meaningless. We are disturbed that the sectoral plans from the Department of Health and Children makes no reference to the concept of introducing national standards for disability services or introducing an independent social service inspectorate, which is a very serious flaw in our minds.

We, in NAHMI, are particularly concerned about the separation of the assessment report and the service statement. As it stands, people may never receive certain services in their assessment report. The alternative would be for the assessment report to list the services required in the order of importance. There are no timeframes for accommodating needs identified at the assessment stage. It should be feasible to work out what would be possible over a period and to make provision for review. Instead, if provision of the service is not judged practical or if resources do not at the moment allow it, the person simply will not get the service. We need linkages. People need to have some come-back if they do not get what they require. There must be progress. Plans to provide services over a timeframe are also required and these plans must be based on need. The Bill makes no provision for placing a priority on any services such as speech therapy. Significant needs should be given the greatest priority.

Such redress and enforcement procedures as exist in the Bill are designed to keep people away from the courts. The complaints and appeals system is both cumbersome and bureaucratic and will require a new army of civil servants to operate it. We fear this will be paid for at the expense of people with disabilities. The Bill does not clearly provide a means of redress through the courts, nor does it provide easily and expressly stated rights. The Equality Tribunal and the Equality Authority have no role under the Bill despite the fact that the DLCG asked for it. It should also be remembered that access to court is only necessary when there is non-compliance with legislation. If the various bodies that provide its services were to meet their obligations to people with disabilities, there should be no question of litigation.

In our submission we made no mention of the Comhairle legislation because we thought that was separate but since the NDA brought it up, I would make one point. The Comhairle legislation relates to access to services by people who perhaps have no services. In much of our work we find we have huge difficulties with people who have existing services but who have great problems or may be at risk in those services, and I am not quite sure whether the Comhairle legislation covers personal advocacy for those people in those services. My colleague, Ms Frieda Finlay, will give the committee a more personal account.

Ms Frieda Finlay

I am the mother of a 30 year old woman who has Down's syndrome. Mandy is my daughter's name. She and her friends are regarded, not consciously of course, as second class citizens in this country. Since the day she was born, my daughter has been an unequal citizen. She has depended largely on charity for her education, her training, her independence and her dignity. With most of her friends, she has spent years on different waiting lists.

Others are not nearly so lucky. Members, I imagine, will have read last weekend about Lewis O'Carolan, a 14 year old boy trapped in a terrifying autistic world. They will have read about how that condition, and the complete lack of any appropriate services or care, is destroying his life and the life of his family. NAMHI could introduce this committee to dozens, if not hundreds, of families like Lewis's. We could invite the Members, if we thought they would come, to see how a great many adults with similar conditions live in places like St. Ita's, Portrane.

When your child is born with an intellectual disability in Ireland, you move into a different world where you must fight for everything and learn to be grateful for every development. Given that I have lived in that world for 30 years, I was delighted when I heard that the Disability Bill was to be published, but I felt totally betrayed and insulted when I read it. The one thing living in that world has taught all of us is that people with intellectual disabilities are at the very bottom of the political queue. Services have been historically underfunded in good times and they are the first to be cut in bad times. I thought the Disability Bill would end that situation forever. I thought it would finally lift people with a disability from the end of the queue and put them in a situation where they no longer had to beg for the dignity and equality the rest of us take for granted, but when one reads the Bill, with all its constraints and bureaucracy, one realises it will achieve nothing.

If one applies the Bill to the case of Lewis, whose heart-rending story was published last week, one will see what I mean. Lewis would probably be entitled to an assessment under the Bill but we cannot even be sure about that because there is nothing certain in this Bill. However, when we ask if he will be entitled to anything at all in the way of services he and his family so desperately need, the answer is "No". He will only get what is practicable. He will only get what we, in one of the richest countries in the world, decide we can afford. Lewis is in prison now, like hundreds of others. This Bill could be the key that opens his prison door but it is so mean-spirited, so lacking in anything like basic humanity that it will not make the slightest difference to him.

We read in the newspaper that Lewis's family, in desperation, are planning to go to court to get a service for their son, ten years after his diagnosis. No doubt someone will say they do not want the lawyers to be making money and that is why they have written the Bill they way they have. Does anyone seriously believe that the parents of a 14 year old boy want to go to court? Does everyone not know that these parents would give everything they have if their son could just get some appropriate service, some happiness, some freedom from his pain? That is why we, as parents, are here.

This Disability Bill must be re-written. It must enable people with disabilities to look forward with some hope and confidence. It must change the way things are now. As it stands, the Bill will change nothing. If it is allowed to go through Dáil Éireann as it is, it will bring shame on this House.

Chairman

Thank you. I now call on the representative of Forum of People with Disabilities, Ms Mary Keogh, and Mr. Brian Alyward who is a forum council member.

Ms Keogh

I thank the committee for the invitation to present today. Brian will frame the forum's response by making a general comment and then I will come back on the substantive issues and recommendations and conclude.

Mr. Brian Aylward

The forum wishes to make a number of brief opening comments and Ms Keogh will deal with the others. First, it is the forum's view that this is not a disability Bill but a mere assessment Bill. It will essentially point out to people with disabilities the current position as it exists for them. However, it will not bring about circumstances of progressive realisation with respect to their entitlements and rights to services.

Second, it is the view of the forum that the Bill is not rights based and that it will merely establish a bureaucratic superstructure which will lead to parents, if they are obliged to fight for services, will end up engaging in long, drawn out battles. It is also our view that it only deals with health and educational needs, particularly in terms of the service statements in Part 2.

Third — this is a crucial point for the forum — the Bill places resources and practicability, rather than the needs of disabled people and those people themselves, at the centre of matters. That is a serious concern.

The forum is also concerned about mainstreaming, particularly as this relates to section 25 and the practicability and resource implications. Providing services in a mainstream context may lead to unreasonable delays in such services being provided to others. That is a matter of serious concern for the forum because it may to circumstances where disabled people will be sidelined.

My final general point involves the relationship between the Bill and the Employment Equality Act and the Equal Status Act. The forum is concerned about the monitoring provisions in the employment sections of the Bill. In particular, it is the forum's view that the Employment Authority should monitor compliance not just with the 3% quota but also all other employment equality measures and anything related thereto. There is nothing in the Bill to the effect that failure to comply with or abide by its provisions would constitute discrimination under the Equal Status Act. If it did contain such a stipulation, matters arising would then come under the ambit or jurisdiction of the Equality Authority and the Office of the Director of Equality Investigation.

I wish to make a brief point regarding the Comhairle legislation. The DLCG recommended the establishment of an independent advocacy agency. However, this will not be established under the Bill before us.

Ms Keogh

I shall concentrate on the specific issues. The forum is a member of the DLCG and supports the stance taken by that organisation. It also supports the key points identified to the Minister of State, Deputy Fahey, on 27 October. However, the forum also notes that the Second Stage debate on the Bill is currently under way without these flaws being addressed. We wrote to the Chairman in respect of this matter.

Chairman

That is correct.

Ms Keogh

In our submission, we would like to expand on some of the key issues of particular interest to the forum. First, I wish to refer to the definition of disability. The definitions in the Bill are such that they would exclude many disabled people, even from assessment, and they perpetuate a medical model response to disability. The central focus is on the problems of cost and health, with no appreciation of mainstreaming. Our recommendation is that the definition must be broadened to be inclusive and that the definition in existing equality legislation should be used.

In terms of resources and funding, section 5(3) implies that resources for disability services will only be available after the Minister or public body meets all other obligations. The Bill does not provide for ring-fencing of funding for disability services. While none of us are naive enough to think that disability rights do not equate to increased Government expenditure, the Government must get serious in terms of how current disability funding is being spent. The disability sector has not been reviewed to date by the Government and questions have never been asked as to how current funding actually impacts on disabled people's daily lives. Our recommendation in this regard is that section 5 of the Bill should be reviewed and restated in order to ensure that it does not undermine current legally enforceable rights disabled people have under existing equality legislation. The section should also establish a mandatory obligation on all Departments to include disabled people's requirements as they prepare their annual budgets. The Government should, as a matter of urgency, undertake a review of its expenditure on disability services and this should be managed by the Committee of Public Accounts. It should review the outputs of service providers and the impact of funding on the individual lives of disabled people.

The issue of enforceability is masked in the Bill behind a structure that ultimately tells us that we have little or no right for redress to the courts. It is designed to limit enforcement and it provides for three different systems of redress: redress under assessment and service delivery; redress under public bodies for information on access; and redress under sectoral plans. We recommend that the complaints-enforcement mechanism should be build on current redress systems such as the Equality Tribunal.

I wish now to refer to the impact on disabled peoples rights under existing legislation. As stated earlier, the Bill does not create a synergy with the equality legislation. The approach taken in the Disability Bill for provision of services by public bodies is in stark contrast to the current concepts of reasonable accommodation and disproportionate burden which exist in the existing equality legislation. Section 5 could undermine disabled peoples existing rights under the equality legislation. We recommend that the Bill should state explicitly that nothing in its provisions shall reduce the current liabilities of the public sector employers and service providers under the Employment Equality Acts and the Equal Status Acts.

In its current format, the Disability Bill reflects a move away from the current framework that promotes equality and human rights. It does not build on the rights that are given to disabled people under existing equality legislation. It reflects the current thinking about disabled people, namely, the goodwill approach. Disabled people and their families do not want goodwill.

The Bill provides limited protection to disabled people but provides comprehensive protection to our State. The protection to the State can be summed up in one phrase, namely "If it costs too much, we cannot do it and we have written a piece of legislation which protects our rights to refuse." When one peruses the press cuttings relating to the fall of the previous Bill in 2002, one cannot help but be amazed at the anger that came from disabled people, their families and the general public at that time. We began to ask questions, namely, why should we be treated differently, why should we accept sub-standard delivery of services, why should we be content to sit in our homes in isolation from the rest of the community and why should we have price tags attached to our lives?

Disabled people — their wishes, hopes and desires — have been moving into the centre of the Irish political stage through the debate for rights-based legislation. This debate is not new. The Commission on the Status of People with Disabilities called for rights-based legislation in the 1990s and over a decade later this debate will continue until we in the disability community believe that this State gives us our rights as equal citizens.

As the Second Stage debate on the Bill in the Dáil continues this week — despite calls from the disability community to address its fundamental flaws before the debate commences — one can only surmise that the Government is again ignoring the wishes of its disabled citizens.

Chairman

I thank Ms Keogh. We will next hear from Nigel Brander who is chairperson of People with Disabilities in Ireland. I welcome Mr. Brander to the meeting.

Mr. Nigel Brander

I will try not to reiterate what others have already said. However, in its 1996 report, the Commission on the Status of People with Disabilities outlined a vision of how the lives of people with disabilities could and should be improved through the provision of co-ordinated service delivery and physical access. This should have been backed up by legislation which sets out the rights of people with disabilities and provides a means of redress for those whose rights — including some basic human rights — have been denied. Unfortunately, I do not believe the Bill goes that far.

As regards the Disability Bill 2004, the assessment of needs should be a comprehensive examination of all aspects of a person's life and the right to such an assessment should be incorporated in the Bill. If the definition of disability is predicated on the substantial restriction in the capacity of a person to carry on a profession, business or occupation or to participate in social or cultural life in the State, then the assessment should consider what an individual needs to lessen the impact of that restriction. Housing, access to employment, transport and advocacy should all be considered in this context.

Housing needs, in particular, should be included in the assessment for two reasons. First, assessment of housing needs by most local authorities depends on a report from an occupational therapist which is supplied by the health board. At a minimum, provision should be made that if an assessment is being carried out by such professionals for the purposes of Part 2 of the Bill, their report should suffice for the assessment purposes of local authorities. This is essential in terms of minimising duplication of scarce resources. Second, the benefit an individual with a disability would derive from having their educational and health needs addressed would be considerably lessened if they do not have somewhere adequate to live because it would reduce their chances of finding work and achieving economic independence.

The definition in the Bill is too restrictive, particularly in Part 2 where the words "substantial restriction" are further defined. The definition of "substantial restriction" is so substantially restrictive that it potentially excludes vast numbers of people with disabilities from the provisions of this Part. Many of these people may have severe disabilities but would be denied the services they badly need because they may not need such services on a continual basis. It is a wonderful example of political logic to deny services to people with a permanent disability who need them because they may only need them on a once off basis.

A number of further issues are relevant. Certain services by their very nature are not provided on a continual basis. Occupational therapy is one example. Certain conditions such as multiple sclerosis and a number of mental health conditions can be irregular. It is arguable that excluding those whose condition is permanent but may not need services regularly will result in a situation where, through lack of services, their condition worsens and they come under the definition of "substantial restriction."

I refer to the service statements and the liaison officer.

The eligibility criteria referred to in section 10(6)(b) concern us greatly as they further narrow the likelihood of a person with a disability receiving services and could make service delivery dependent on having a medical card. The role of the liaison officer should be strengthened and key Departments such as Environment, Heritage and Local Government should be bound by the contents of the assessment report and obliged to do more than simply contact the applicant. A timescale by which a member of staff of a public body must respond to the liaison officer will be crucial if a real attempt at service co-ordination is to be made.

The Bill, as drafted, does not make provision for progressivity in regard to the unmet needs of individuals. There are two distinct aspects to this. First, on an individual level, the Bill should be amended to include a guarantee of increasing service provision over time to an individual, thereby, reducing gradually the gap between the assessment report and the service statement. Second, an obligation should be put on all Departments and public bodies to address issues such as capacity and co-ordination in a cross-departmental way so that, for example, sufficient numbers of college places will be provided to ensure adequate numbers of health care professionals into the future.

Section 24(4)(c) allows a Minister to exclude a building from the access provisions on the grounds that the building is used infrequently by people with disabilities. This should be deleted from the legislation. It would be unfair and illogical to determine whether or a building should be made accessible by examining how often people with disabilities use an inaccessible building. The definition of “public building” should be broadened to include even the parts of a building that members of the public would not generally access. Members of the public might not have access to large areas of public buildings on a regular basis but the building should be accessible so that people with disabilities can be employed there or attend a meeting.

The sectoral plans should require Departments to do more than provide information in the plans. Currently, the content of the plans is weak and insubstantial and few meaningful commitments have been put forward.

Resources and accountability are essential provisions in the legislation. It is imperative that to ensure efficient targeting and accountability responsibility for effective service delivery is identified, especially as it has been suggested that in excess of €15 billion will be provided. PwDI suggest that for the strategy to be effective a triple layer of accountability needs to be established by the Government, preferably in the legislation. Measures to ensure financial accountability in regard to disability specific spending should be put in place. Political accountability, that is, the responsibility for the management of disability specific spending, should be allocated to one Minister who will oversee implementation of the strategy. Clear, realistic targets and budgets need to be devised and service providers at all levels should be held accountable for how they meet their targets and whether they achieve results. Service providers also need to ensure compliance with the national standards proposed by the NDA.

PwDI, as a cross disability representative organisation and a member of the DLCG, also supports the DLCG submission to the Government and wishes to emphasise the importance of the ten key issues of concern set out in it.

Chairman

I thank Mr. Brander. I welcome the Rehab Group representatives, Cliodhna O'Neill and Sonya Feoton.

Ms Cliodhna O’Neill

We echo comments of the DLCG. The Rehab Group has been part of the disability consultation process through membership of various umbrella bodies and we would very much like to reiterate the ten points made earlier. We have provided services to people with disabilities for more than 50 years. During that time, our experiences have been wide and varied but we welcome the recent debate on the need to introduce legislation to ensure people with disabilities can live independently.

Chairman

Has Ms O'Neill a written submission?

Ms O’Neill

I am afraid, due to our wideconsultation process, one or two details are needed——

Chairman

Has Rehab a submission?

Ms O’Neill

No, we will forward it. We welcome the opportunity provided by the committee. Given that our colleagues have made comprehensive submissions, we will concentrate on a number of issues which have not been mentioned to date. The Bill forms a fundamental part of the national disability strategy and we view it, therefore, as one part of the whole. We look forward to the opportunity to comment on the other parts as opportunities arise, particularly the Comhairle (Amendment) Bill 2004. We also anticipate wide consultation on the sectoral plans when they come into play following enactment of the Disability Bill. We eagerly await details on the planned multi-annual funding package announced as part of the national disability strategy.

Our submission will include our comments on the definition of "disability". I support earlier comments about how exclusionary is it. It is extraordinarily restrictive and we are concerned about the use of the terms "substantial restriction" and "enduring". In addition, the interpretation of the definition of "services" under section 2 is important. The definition is the same as earlier definitions, where it is defined as any service provided to any member of the public. The notion that the need for a public service on an enduring basis should be part of the conditions on which one would be considered to have a disability is strange. It is particularly so where there is no right to such a service so that requiring the service is a prerequisite for being considered disabled but being disabled and in need of the service affords no right to it. That does not make much sense to us.

I refer to the assessment of need process under Part 2. We would like clarity on whether the right to an independent assessment of need will be provided for a person with a disability. If it is provided for in the legislation, it could be more positively framed as a right and the language made clearer. We have problems with fundamental flaws in the manner in which assessments will be conducted and how that will impact on the statement of services and, ultimately, on the services a person will receive. Ideally, in a process such as this, the person should be at the centre of the service. The assessment of need process is being established as a gateway to services but it should be a planning session where a strategy is devised to maximise the independence of and opportunities for that person. It should be an interactive, inclusive process, not an invasive procedure.

The empowerment of people with disabilities with greater choice, flexibility and improved service quality should be a fundamental tenet of the legislation. The assessment process is not person-centred and we are disappointed that it deals only with health and educational services. More detail is required about how the assessment process will work and that will be provided in regulations. The explanatory memorandum states the health information and quality authority will be the body responsible for drafting them. There are no details about representation of relevant stakeholders and we would like information on that to ensure special representation is assured for the disability sector.

The trend internationally is towards providing people with disabilities with more choices and greater control over the services they receive. A literal interpretation of the legislation in regard to assessment and the delivery of services could provide for the opposite. We have concerns with the manner in which the assessment process and the subsequent statement of services relate to each other. The person who will ultimately be in receipt of the services is involved only in the first stage of the assessment process and the involvement will exist to the extent outlined in the guidelines, which will be published later. However, there is no provision for involvement after their assessment when the statement of services is being drawn up. Items to be recorded in the needs assessment include whether the person has a disability, its nature and extent. However, the wishes of the person concerned do not feature which seems to us like a serious omission.

There is no specific obligation on the health board to inform every person in receipt of a service or who believes he or she may have need of a service of the right to this assessment. Unfortunately, this is a feature of services in Ireland. One must know they are available or go looking for them. Rather than being inspired, people should have the assessment of needs brought to their attention. There is no system to ensure those who may be unable to ask for it will get it. Section 8(4) goes some way towards addressing this but could be improved.

Equally, there is no obvious system to filter children or people with an acquired disability automatically into the assessment process. It is extremely difficult for the parents of children with newly diagnosed disabilities to manoeuvre their way into this complicated and unknown system. We need a procedure whereby an automatic assessment right is made clear to parents through the public health system.

More input by the client is required following the assessment process. If prioritisation of services is to be required on the basis of available resources, the person concerned should have an input. His or her wishes should be taken into consideration.

We are concerned about the assessment officer system, as some of my colleagues have said. Placing assessment officers as employees of the health board is problematic. We are particularly concerned about the provision that assessments can be carried out by other health board officers who it is not specified must be independent. Obviously, they will have to follow the assessment procedures under the regulations but we wonder if it will be possible for a health board employee who works in other services to carry out an assessment without regard to the cost of providing or the capacity to provide the assessment. Is this appropriate?

We are concerned at the timeframe for assessments. We believe it is too long and should be made shorter to tie in with the Education Act. We are also concerned about the issue of unmet needs, on which there should be an aggregate report. We are further concerned about the training of assessment officers.

Our written submission will deal with a wider range of issues. As a service provider, we have a particular interest in the issues mentioned.

Chairman

I now welcome Mr. Brian O'Donnell, chief executive officer, and Mr. Wally Freyne, director, National Federation of Voluntary Bodies.

Mr. Brian O’Donnell

I thank the Chairman for giving us the opportunity to make this presentation. As co-signatories to the document, Equal Citizens: Proposals for Core Elements of Disability Legislation, and as members of the disability legislation consultation group, we support the position as outlined by Dr. Kerins on behalf of the DLCG.

The National Federation of Voluntary Bodies is the national umbrella organisation for voluntary religious organisations providing services for people with an intellectual disability. While the services are provided on a service agreement basis with the health boards and the Eastern Regional Health Authority, federation bodies account for 85% of direct service provision. Many of our organisations have been in existence for a long time. For example, the Daughters of Charity, which Mr. Wally Freyne represents, has been providing services since 1868.

We view the Bill as potentially the most ground breaking legislation in the history of the State. It is, therefore, absolutely vital that we get it right in mapping the way forward for people with disabilities. As drafted, the Bill has serious flaws. Unless these are addressed, the Bill will not receive the support of the National Federation of Voluntary Bodies. Nevertheless, we were encouraged at our meeting with the Minister of State, Deputy Fahey, to hear him give a commitment to engage with us in a process to which we look forward. We see today's meeting as the beginning of that process and hope the Bill will be got right.

I do not propose to go through the ten points articulated clearly by Dr. Kerins. I will concentrate on three aspects, the first of which is the issue of resourcing. In our submission we state the Bill must provide for the clear ring-fencing of disability-specific resources. Section 5 is unnecessarily complex and ambiguous and requires redrafting to state clearly that funding voted for disability services development will be ring-fenced.

Prior to my current employment with the National Federation of Voluntary Bodies, I worked for 16 years with the Western Health Board where my most recent post was in the area of disability services. My 16 years experience have taught me that when pressure is exerted on the acute sector of the health services, for example, in accident and emergency units or as a result of the winter vomiting bug, all the resources available to a health board chief executive are quickly pulled in from other sectors to respond to that need. Resources for primary care, continuing care, community care and disability services are used to respond to the acute need. This will continue to be the case unless there is clear ring-fencing of disability-specific funding. This is of critical importance.

The second issue relates to progressivity. While Mr. Freyne will speak about this issue, I will make a brief point, drawing on our experience. Between 1999 and 2001 there was an unprecedented level of investment in services development. This was welcome and much progress was made in meeting the needs of people with intellectual disabilities who were on waiting lists for services. The investment programme ceased in 2002, which had the effect of unravelling much of the good work which had been done in the previous three years. The expectation, hope and confidence of families which the programme had generated evaporated quickly. This was reflected in an explosion in waiting lists for services. That experience teaches us there is a need to associate multi-annual funding with this Bill when it is got right. Progression needs to be maintained for many years until all the needs of people with disabilities are met.

Third, I have referred to the potentially ground breaking nature of the legislation. In the light of European and international commitments, it should be reviewed within two years of its operation or three years of its enactment, whichever is the sooner.

Mr. Wally Freyne

As Mr. O'Donnell said, we endorse all the points made by Dr. Kerins. On the issue of progressivity, I am worried about the gap between the assessment report and the service statement. The progress made in meeting all of what is contained in the assessment report needs to be addressed within the Bill. Otherwise, there will be no guarantee that the services referred to in the assessment report will be delivered. There must be a continuing review while a national register must be produced relating to the gap between what is assessed as needed and what is being delivered at any given time. The national intellectual disability database provides a five year timeframe of what is needed.

Many in long-term care are not receiving a service adequate to their needs. My concern, as director of services for one of the biggest providers of services in the intellectual disability sector, is that many of the people I look after are not getting the care they need. Their access to an assessment of needs is critical because their changing needs over a period of time are not being addressed in budget allocation.

The issue of capacity to consent must be addressed. All aspects of the Bill are relevant to the total spectrum of people with intellectual, physical and sensory disabilities. However, the issue of capacity to consent is particular to intellectual disability. This is true even of consent to an assessment of need. We take liberties in engaging in an assessment of needs of a person not capable of giving consent, regardless of whether it is informed.

Many of our people are not but some are. In earlier submissions before the last Bill went belly-up, we had sought a paragraph on that in the Bill. It was not addressed at the time and our advice was that this was too complex an issue and required separate legislation. We would like to see a reference in this Bill to the need for that legislation and a time frame in which it should be brought forward. That would address the issue at least in some form. There are so many people about whom we take decisions on a daily basis who are not capable of giving consent and who do not even have family members capable of speaking on their behalf. We have heard of the restrictions on advocacy service in this Bill. It is a significant issue that still requires addressing, which according to our advice cannot be dealt with in the context of this Bill but it should be referenced in this Bill.

Chairman

For the benefit of members who have just arrived, we are dealing with brief questions only. Any comments or opinions should be kept until the end of the meeting.

Deputy P. Power

I have two questions for Ms Deirdre Carroll and Mr. Brian Aylward. I thank Ms Carroll for her presentation to the groups in Limerick, which was very helpful to the friends and parents. Section 7(5) of the Bill states:

An assessment under this section of the Bill shall be carried out without regard to the cost of, or the capacity to provide, any service identified in the assessment as being appropriate to meet the needs of the applicant concerned."

In the context of that fairly wide statement, would Ms Carroll accept that if unlimited resources were available, the Bill provides the conduit for the delivery of those services? For example, although people will argue over the figures, a figure of €2.5 billion has been mentioned as an annual provision. If that was multiplied by a factor of ten, making €25 billion, and those unlimited resources were available, does the Bill provide an adequate conduit or method of delivery of those services?

My second question is related. Would the delegation accept that the Bill cannot be read simply in isolation, that it can only be read in the context of multi-annual ring-fenced funding provisions as part of an overall disability strategy? It is too narrow a view to consider the Bill without looking at the overall framework that will be provided.

Deputy Ó Snodaigh

My questions are related to the NAMHI submission and to the National Federation of Voluntary Bodies. NAMHI is critical of the sectoral plans. Should the sectoral plans be there at all or should there be a more general provision which mandates plans to be outlined in a process of development? It could then be directed towards all departments rather than the very limited range. What details should be included in the Bill in respect of the qualifications of the assessment officers? Should it include very specific details? Several speakers have made the point that the complaints system is wrong or not appropriate. NAMHI criticised the two different models. Which would be its preferred model? Should it be located in the office of the Ombudsman or in the office of the Director of Equality Investigations?

Deputy F. McGrath

I welcome the groups. I have three brief questions. Ms Finlay's comments are refreshing and it is important for the committee to hear the views of a parent of a person with intellectual disability. I am also a parent and I share her concerns. Ms Finlay used very strong words in her submission, such as "betrayed" and "insulted". In her experience as a parent and as a member NAMHI, post the Special Olympics, has there been progress in respect of services for people with disabilities? My second question relates to waiting lists for people with intellectual disabilities. Approximately 3,000 people are on waiting lists for people with disabilities. These people are waiting for day care, respite care and residential care. will this Bill do anything for those 3,000 people and their families?

Mr. Brian O'Donnell in his submission states that the Bill protects the State's right to refuse services to disabled people by implementing in legislation clauses such as "where resources permit or where practicable". Would Mr. O'Donnell be satisfied if these words were deleted from the legislation? My final question is directed to Mr. Brian Aylward and Mr. Freyne and is related to the services. They stated that when the investment ceased, the waiting lists increased. Is that in contradiction of the myth and spin that is commonly used about the health services, that if money is poured into the health services, it goes down a black hole? There is a current belief in many sectors that those who invest in the health services are throwing money into a black hole but I do not believe that myth.

Senator Kett

My question is addressed to Mr. Brian Aylward. He stated that he felt the tenor of the Bill was geared towards health and educational needs. In his submission he stated that health services means a service including a personal social service provided by, or on behalf of a health board. My interpretation of a social service and I may be mistaken, is a service that would provide, for instance, counselling, help towards independent living, day centre activities, technological aids and so on. Does the term "social service" provide a broadening of the issue that concerns his group?

My second question is related to the separation of the assessment report and the service statement. I hope one is done independently and the other is resource-led. Is the statement in the submission made on the basis that the group is looking to quantify the deficiencies between one and the other and is this the reason it is suggesting that issues should be prioritised on the service statement? I wonder why is there is a need to look at both so closely together, bearing in mind that one is resource-led. To be realistic, what the assessment decides will not be realised in its totality in the service statement even though it would be nice if it could be. My final point is that the process is cumbersome in terms of the appeals process. There is an assessment officer, liaison officer, complaints officer and appeals officer. It seems to be a number of levels but they may be necessary when dealing with a difficult case. What would the group put in its place?

Deputy Hoctor

I have two short questions and I will leave my comments until the end of the session. My first question is for Ms Cliodhna O'Neill. She referred to the procedure as invasive. Why does she say it is invasive? We hope and aim to make it supportive rather than invasive. The Forum of People with Disabilities stated in its submission that access to public buildings and employment in the public service does not require legislation but can be achieved by a ministerial directive. Would the forum not regard it as a clear advantage to have such provisions put into legislation in order to copperfasten it? I would like to hear the comments of the delegation.

Senator Terry

I thank everybody for giving broad and interesting views on the Bill. The definition of disability is unacceptable to most people. Can this problem be overcome? Will Ms Carroll outline how she believes this should be defined? She also mentioned the administrative structure, which would probably be cumbersome and top-heavy. Does she see a better way to get around administering the provisions of the Bill so that the funding, which should be used to deliver the services, will not be spent on a top-heavy bureaucracy?

Deputy Lynch

I am not fussed who answers my question. Whereas we are all agreed that the Disability Bill is long overdue, is the Bill as drafted premature?

Deputy Stanton

My initial questions are for NAMHI. The previous Bill was withdrawn because it did not allow individuals to seek redress through the courts. Section 19 of this Bill has a similar provision. Does NAMHI believe that this Bill contains a similar mechanism to the previous one, which I believe was section 47 of that Bill? Section 19 of this Bill states: "An appeal to a court shall not lie against a determination of the appeals officer other than an appeal on a point of law to the High Court." Does this mean that it is streamlined to this point?

The Forum of People with Disabilities suggested that this Bill might make things worse. Is it suggesting it should be withdrawn altogether?

Will the representatives of People with Disabilities in Ireland give their interpretation of section 5? My reading of it is that the health boards must do everything to meet their obligations and that any funding left over can go towards the funding of the provisions of this Bill. Does the PwDI agree with that interpretation? I have called this a "left-over" Bill. Is that an accurate description?

The Rehab Group highlighted assessment officers. The Bill does not outline what qualifications they should have or how many should be appointed. In addition it does not outline how the assessment should take place and to what it should take regard. The assessment officer is also an employee of the health board. Should more be done on this area?

I have two questions for the National Federation of Voluntary Bodies. It has been suggested that a review of funding for the disability sector should take place. Does the federation agree and, if so, how would it envisage it happening? Will the federation comment on section 10(6)(b) which states that in preparing the service statement the liaison officer concerned should have regard to “the eligibility of the applicant for services under the Health Acts 1947 to 2004”. What does the federation believe this means? Does it mean there will be a means test or will other mechanisms under these Health Acts be used to exclude people from services and from a service statement.

Ms Carroll

I ask the indulgence of the Chairman. I need to be somewhere at 12 o'clock and I did not realise we would be this late.

Chairman

As the first question was directed to Ms Carroll, she should proceed to answer.

Ms Carroll

I appreciate that and I hope my colleagues do not mind. A number of questions were directed at NAMHI. Deputy Power asked about the section on the assessment. Section 7(5) states that an assessment shall be carried out without regard to the cost or the capacity to provide. We welcome this provision. We all thought this Bill would introduce an independent right to an assessment of need. However, concerns have been expressed, particularly over section 5 on provision of resources and extent of provision. In the event of a health board using up all its money for a particular year on——

Deputy P. Power

I was speaking in the context of unlimited resources. In the absence of section 5, does section 7(5) provide the conduit for the delivery of these services?

Ms Carroll

If there were unlimited resources, we would not have the difficulties of "as far as practicable" and the resource constraints on the health boards. That would allow it. We are not even asking for unlimited resources. None of us has been that naive. Legislation will cost money; none of us has said otherwise. We will need to invest in people and our services. As all my colleagues have said, we need a commitment to some progress. A statement of priority of needs in the service statement would go a long way towards meeting this need. The Comhairle Bill has a statement of priority in stating that the need for a personal advocate will be based on priorities. Why can something similar not be contained in this Bill?

Perhaps the sectoral plans should not be contained in the Bill. Nothing in the legislation drives them. If the legislation placed an obligation on all public bodies and Departments to include people with disabilities in their general day-to-day running, there may not be a need for the sectoral plans. While NAMHI has nothing against the sectoral plans being written and outlined, we need a driving force in the context of the legislation.

On the definition, we would like to see what was recalled in the Disability Legislative Consultation Group. The equal status definition would be more widely embracing than this definition which is very restrictive. We would like to see the term "substantive" removed.

Deputy Stanton asked about section 19. There is little difference between section 47 of the previous Bill and what is contained in this Bill. Every attempt has been made to prevent people going to court. We are told it is permissible to go to the High Court on a point of law in the appeals area. People will say that in the end it is possible to seek a judicial review of a decision. While I am not a lawyer, I am informed that this is a very costly process. People will go to court if they feel they are not getting services as Ms Finlay has outlined. When people are at the end of their tether, they will seek judicial review and will take actions that are likely to be dismissed in the end. We want to prevent that from happening. There may not be a huge difference between this and section 47 of the previous Bill. I am not sure if I have answered every question.

Chairman

Ms Carroll has made a great attempt. I ask Ms Finlay to respond to Deputy McGrath's question.

Ms Finlay

The question was on the Special Olympics. That event raised great awareness and gave a very good feeling to the majority of people in the country. It also forced more funding from the Government. Unfortunately, matters have quietened down for people with intellectual disabilities. Our school-leavers have not been funded in recent years. An emergency case for a person with a learning disability is when both of his or her parents die or where a parent is too old to look after a son or daughter. No funding is available for those instances. Even last year there was a sort of a four-second budget for people with disabilities generally. A sum of €20 million was allocated for capital spending and that has not been received yet. We have been told by the health boards that it is unlikely ever to be received. Even when we are allocated money, we do not get it. I hope that answers the question.

Mr. Aylward

I shall let Ms Keogh answer some of the substantial questions put by Senator Kett and a number of the other members. On the definition, I reiterate what the representative of NAMHI said. It is the view of the forum and of the DLCG that both the Equal Status Act and the Employment Equality Act provide the type of definition that could be acceptable. I am somewhat unclear about Deputy Lynch's question as to whether the Bill is premature. Perhaps she could provide some clarification on that matter.

Chairman

I am sure she will do so.

Deputy Lynch

It is prematurely before the House.

Mr. Aylward

I think it is.

Chairman

Mr. Aylward has outlined his thoughts on the matter in a letter.

Mr. O’Donnell

I will answer Deputy Finian McGrath's question about waiting lists after I speak about the investment programme. The experience of the National Federation of Voluntary Bodies is that families are very reasonable when they present for services. They are quite happy to wait their turn. People present their sons, daughters, brothers or sisters for residential care services as a last resort only. When the investment programme ceased, there was a change in such people's expectation that there will be a place for their family members when their turn comes. When they asked service providers for a place they were immediately placed on waiting lists, which caused an explosion in waiting lists and placed huge pressure on the services. The respite services, in particular, came under enormous pressure as a result of beds being blocked. Mr. Wally Freyne, who is involved in the day-to-day business, might elaborate on that.

Mr. Freyne

We made progress on waiting lists when the three-year programme was in place. Such lists are measured in a five-year timeframe, based on figures from the national intellectual database. As we have dealt only with emergency cases in the past two years, by and large, the planned removal and reduction of waiting lists has not taken place. Waiting lists are growing as more people come into the system every year. People look for residential care when they are denied access to services they expect to have. Mr. Brian O'Donnell has alluded to the fact that such people do not normally want residential care. They may prefer respite care or home support because they prefer to keep their children or siblings at home for as long as possible. The Government is forcing the lists to grow, in a sense, by failing to put in place multi-annual budgets or to plan the level of service provision based on the waiting lists. If one does not encourage unreasonable expectation on the part of families, they will get the services they need and waiting lists will be erased.

Deputy Stanton spoke about eligibility in relation to the Health Acts 1947 to 2004. The National Federation of Voluntary Bodies has a question mark in that regard. A suggestion has been made about people without medical cards. I refer to the service statement, as opposed to the assessment. As Mr. Nigel Brander said earlier, those who do not have medical cards are not entitled to services. In our sector, those over the age of 18 who are assessed as having an intellectual disability are entitled to medical cards, by and large. There is no issue in that regard for our sector.

Mr. Brander

I would like to speak about funding. I agree with the member of the committee who said the health service is not a black hole. Disability services get left behind, to be honest, when specific disability funding is put into the pot by the health boards. Such services need specific disability funding for that reason, as well as somebody to oversee it. We do not know how much the multi-annual funding will be, but it is obvious it will be a vast amount of money. There needs to be accountability in respect of the funding, which needs to be specific to disability services if we are to make any change to the lives of people with disabilities.

Ms O’Neill

I wish to respond to Deputy Hoctor's question. The Rehab Group believes there is a need for the specific recording of a person's wishes during the assessment process. The group would like to make some recommendations in that regard and it will do so in its written submission. I agree with Deputy Stanton, who argued that assessment officers will need to have qualifications and experience. Everybody thinks that will have to be considered carefully because the officers will have difficult requirements. They will need an encyclopaedic knowledge of a number of different areas. I do not have a specific solution in that regard, but I am sure everybody will agree the officers will need specific training to fulfil their roles.

Ms Keogh

Senator Kett asked me to clarify the point made by the Forum of People with Disabilities about the assessment of services. The forum considers such assessments should relate to holistic needs, rather than merely relating to health and education needs. I think that demand has been identified by all the groups which have attended this meeting. Ms Deirdre Carroll spoke about this issue earlier. The service statement will identify and prioritise the needs. The forum is concerned that there should be a recognised timeframe, which is missing at present.

Deputy Hoctor asked about the ministerial directive, which was not mentioned in the forum's submission but in a letter it had forwarded. The submission referred to building on the existing anti-discrimination legislation and ensuring this Bill creates a synergy in that regard rather than undermining it.

I find it curious that I was asked whether the Disability Bill 2004 is premature. A substantial portion of the Bill is predicated on the current health board system, which will cease to exist after it is reformed in the new year. Perhaps one could say the Bill is premature in that context. I will return to Deputy Ó Snodaigh's comment.

A member of the committee spoke about the complicated system of appeals procedures and liaison officers. The forum believes the current system of redress, which involves the Office of the Director of Equality Investigations, should continue to be used. As the health and education sectors come under the remit of the equality legislation, we do not see the need to duplicate, and therefore waste, resources.

I panic when I hear people speak about unlimited resources. The disability community is not looking for unlimited resources. It is looking for an effective and efficient way of measuring how resources are being spent at present. It has to be recognised that the Government's current policy is to ignore the amount of money being spent on disability services rather than examining the outputs and the impact on the lives of people with disabilities.

Chairman

It might be a good idea to end this part of the meeting on such a definitive note. The meeting will resume at 12.15 p.m.

Sitting suspended at 11.55 a.m. and resumed at 12.15 p.m.

Chairman

I welcome the groups now in attendance. The procedure is that each will have a maximum of seven minutes to indicate the highlights in its written submission. Written submissions have been or will be read by committee members. There are six groups making proposals. After they have made their presentations, there will be a question and answer session and a round table discussion with members.

The first group from which we will hear is the Disability Federation of Ireland, the representatives of which are Mr. John Dolan, chief executive officer, and Mr. Allen Dunne, senior executive officer.

Mr. John Dolan

I thank the Chairman and the committee for giving me this opportunity. I sat in the Dáil Visitors Gallery during an Adjournment debate when the Chairman made a commitment to hold this meeting. It is a useful start in helping to get the Bill right.

As a member of the disability legislation consultative group, the Disability Federation of Ireland stands foursquare behind its identification of the ten fundamental flaws in the Bill. I do not intend to go through these one after the other.

At its launch, the Taoiseach stated the national disability strategy showed clearly the Government's intention to put a programme of action in place. Such a programme is greatly needed and would be very much welcomed by those who do not live in accessible houses, cannot access public transport or the built environment and are shunted from one ward or unit to another in acute hospitals due to a lack of appropriate rehabilitation facilities and accommodation. They lack communication, mobility or other aids and appliances; cannot afford to attend general practitioners for preventive care and support for a range of conditions, including asthma and epilepsy, and continue to have to rely on community employment schemes for basic personal support care and the facilitation of independent living. They also require access to speech and language therapy, physiotherapy and occupational therapy to preserve and enhance basic functions such as communication and mobility. Everyone here can add to the list from personal experience.

While a Government can choose to implement an action programme without legislation, we absolutely require the imposition of an imperative on each Department and public body through an Act of the Oireachtas to ensure it functions also as the statutory advocate of those members of the public who have disabilities. I suspect that disability is a fact of life which will not go away. Who becomes disabled and how it happens are a lottery, as are the circumstances of a person at the time. Public service operation and planning, however, cannot be a lottery. Departments and agencies must plan on the basis there will be a sizeable number of people with disabilities and disabling conditions and face the challenges involved. If the Disability Bill fails to approach the challenge from the perspective of putting to right the long-standing wrong perpetrated over the lifetime of the State, it will serve merely to offer some form of incremental help to disabled people. If the latter approach is adopted, they will remain petitioners on the edges of society.

As people with disabilities, we do not seek a superior position but know we do not have to continue to be inferior in status to other members of the public. At the end of this process we will know whether we have become equal citizens by virtue of how the Oireachtas has dealt with amendments to the Bill. That is the key. Members of the Oireachtas can make the past another place for people with disabilities or allow current circumstances to roll on, albeit comforted by a commitment to provide extra funding for people with disabilities. That is our view of the Bill.

I would pick up the Bill gingerly because, if we were to assume we were in the National Maternity Hospital rather than the Houses of the Oireachtas, we would, metaphorically speaking, be in the neonatal special care unit. The Bill is vulnerable and weak as it stands but this must not necessarily be the case when it is passed. This is the challenge facing everybody — disability groups and Members of the Oireachtas. We, in the disability sector, are used to being dealt hands of cards which are not the best in the deck. The hand we have been dealt here is weaker than it could have been and the challenge facing us is to move matters on.

The Bill raises a further issue unrelated to disability which the Oireachtas must grasp. This is probably the first time the State's understanding of the concept of public service has been tested. This legislation tests how this democratic republic will plan, budget, implement and review public service. We tackled unemployment but did not consider that the unemployed also included people with disabilities. This is a fault line in how public service considered its remit and the key issue for Members of the Oireachtas. Members protect and maintain public services on behalf of the people, some of whom will be born disabled while others will become disabled.

When, in an unprecedented move, the Exchequer allocated funding to Dublin Bus in the 1990s to increase its fleet by 10%, the company acquired 100 buses, none of which was accessible to disabled people. As a result, its fleet remained 100% inaccessible. In fairness to the company, it is working hard to roll back the problem but people continue to wait while it does so. I do not raise these examples in a cheap way but because they go to the heart of the question of how the Oireachtas asserts its authority with regard to the operation of public services.

The Bill is weak and vulnerable and requires due care and attention and a commitment by Members of the Oireachtas to work on it, in co-operation with us. I have often heard Ministers and Opposition backbenchers express frustration at how public services deal with issues. Members are legislators and make the decisions. I ask them to put down a marker, set a standard, establish a target and move on the legislation.

Chairman

We now have Mr. Brian Howard, chief executive officer, and Ms Caroline McGrath, deputy chief executive officer, Mental Health Ireland.

Mr. Brian Howard

I thank the joint committee for inviting Mental Health Ireland to make a presentation. Like our fellow disability groups, we are concerned about the overall thrust of the Disability Bill. Before considering the legislation in detail, I will describe Mental Health Ireland. The organisation was founded in 1966 to represent the interests of people who suffer from mental disorder and promote mental health. We have 95 local mental health associations in the Twenty-six Counties. Our local associations are engaged in many activities, ranging from befriending patients who have been discharged from hospital, to promotion of mental health in secondary schools and among the general population to the provision of social housing for people who suffer from mental illness. We own or manage at least 90 houses.

My comments will focus on the mental health sector. We are fully committed to the push for rights-based disability legislation, mainly because successive Governments have failed to develop standards of care and treatment facilities. I can quote chapter and verse on the inequities in the mental health sector but will confine myself to making one or two points. In the mid-1980s, 13% of the overall health budget was allocated to developing mental health services. In 2004, this figure had dramatically decreased to 6.8%. There is also a significant disparity in investment of resources. Depending on one's geographical location it ranges from €56per capita to €300 per capita, nearly six times more than the lower figure.

There is a crying need to increase the number of beds and residential facilities in our adolescent mental health services. This is a brief, selective outline of the disparities in the mental health sector. We were very pleased to be associated with the disability legislation consultative group under the auspices of the National Disability Authority. After the failed attempt to pass the flawed Disability Bill in 2001, I was pleased to represent Mental Health Ireland, with other disability groups, in drafting a consensus document entitled, Equal Citizens, which was presented to the Government in February 2002.

The document gave the consensus on the content of new disability legislation. It was not a wish list but a compromise. The eight or ten disability groups which participated in this effort over two years negotiated among ourselves and reached a consensus which could have been realised by Government. We framed it in such a way that it was attainable and implementable. Having presented this document in February 2002, we find ourselves, two months after the publication of the Disability Bill, extremely disappointed. While the new Bill has some minor plus points, overall there are, as Mr. Dolan outlined, ten fundamental flaws. We identified these based solely on our immediate reaction on studying the content of the Bill. It is fundamental to remove these flaws if we are to improve the lot of people with disabilities, in particular those who suffer from mental health problems.

I will briefly outline the origins of disability legislation. The Commission on the Status of People with Disabilities established in 1993 had a clear remit, namely, to set out the necessary changes in legislation, policies, organisation, practices and structures to ensure the needs of people with disabilities are made in a cohesive, comprehensive and cost effective way. Principles for proposed disability legislation formed part and parcel of the commission's findings. It is worth citing the definition of disability drafted by this specialist body in the early 1990s. I regard it as inclusive of all disability groups. It was set out as follows:

... a person with a physical, mental, intellectual, emotional or sensory impairment and who, due to lack of receptiveness and adaptability in existing social structures and otherwise, encounters obstacles to participation on equal and equally effective terms with others in all aspects of life in the community or a person with a record of such impairment or a person who is so regarded by third parties.

The definition of disability is one of the ten fundamental flaws in the Disability Bill 2004. In the case of the mental health sector this definition is important because it is highly restrictive in comparison with the commission's definition drafted in 1993 at the dawn of the disability agenda being put forward by interest groups. While I am sure the Bill's definition has been cited many times today, it bears repeating and reads as follows:

..."disability", in relation to a person, means a substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment;

Mental Health Ireland and the disability legislation consultative group have a serious concern about the definition. It is non-inclusive and its legal interpretation is in the balance, particularly with regard to persons charged with completing assessments of need. Those persons will carry a hell of a lot of power in terms of excluding quite a number of people who suffer from disabilities. This is probably the biggest flaw from the mental health services perspective.

Committee members will have heard from my fellow disability groups that the ring fencing of resourcing is an issue of particular concern. Since the mid-1980s the rate of investment in the mental health service has practically halved and it is unclear if funding is ring fenced to any extent.

I will not go through the other ten points as I am sure the Chairman heard them this morning. Overall, following the failed attempt at passing legislation in 2001, the Disability Bill 2004 is a grave disappointment to Mental Health Ireland and our fellow disability groups. We urge the Opposition parties and Government Deputies to take cognisance of the ten fundamental flaws that have been outlined and address them. These ten points are really not negotiable. We want to see movement on them.

Chairman

We now come to Brainwave, the Irish Epilepsy Association. Ms Geraldine Dunne is the national information officer and Ms Ina O'Byrne is the community resource officer.

Ms Geraldine Dunne

As an organisation, Brainwave looked at this document in the context of the interests of our clients, the people we represent and the issues they bring to us. Our response is framed against that background.

I will briefly give an outline of our organisation. We are a national organisation representing the interests of 40,000 adults and children who have epilepsy, but our work is not confined to those 40,000. Our involvement extends to the whole network and support system around each person with epilepsy, as in effect epilepsy impacts on hundreds of thousands of people in this country on a daily basis. The difficulties experienced by people with epilepsy can be reflected in the hidden nature of the condition, barriers to equal participation, access to services, safety issues which are considerable and psycho-social issues.

In regard to the hidden nature of epilepsy, seizures are episodic, they are often unpredictable and are symptomatic of an underlying tendency so they are not always observable. A person with epilepsy looks much like any other person, except when he or she is having a seizure. This creates difficulties in the context of a full appreciation in wider society of the impact of epilepsy.

Regarding safety issues, as there are serious problems with seizure control, morbidity and mortality rates are of concern. Some 79% of our clients could potentially have their seizures controlled but that does not happen in practice. A UK study from earlier this year indicated that in the UK where services include national centres and considerably more neurologists than we have, only 52% of people enjoyed full seizure control which gives rise to grave concerns that the situation is significantly worse here.

Excess mortality at two to three times greater than the general population is associated with epilepsy. These deaths are seizure related and are potentially preventable. The rate is 70 to 80 per year in Ireland and to that we must add innumerable injuries and hospitalisations.

Many of the issues that arise are directly related to lack of access to services. The majority of our clients present to us with difficulties around lack of access to specialist services. Not all people have access to a consultant neurologist and there is no specialist centre for the assessment of people on a residential basis whereas every other country in Europe has a national centre for epilepsy.

In regard to cognitive and psycho-social issues, our clients are more affected by depression and suicide rates are up to 25 times higher among people with temporal lobe epilepsy.

A number of concerns arise when we look at what the Disability Bill proposes to deliver. Like many of our colleagues in disability, we have similar concerns about the concept of disability, which become magnified when it comes to hidden disabilities. We need to have greater recognition of hidden disabilities. Other speakers highlighted the use of the terms "substantial restriction" and "enduring". We have very grave concerns about the use of these terms and question how our clients fit in to this model. Seizure patterns can change and control can be lost. How is a person with epilepsy defined in the context of an enduring disability? One of the major issues that comes up for us is that restrictive terminology is likely to increase the burden of proof faced on people when being assessed in connection with disability. We are concerned that it will become more problematic for people to get access to a consultant to back up their case.

People with epilepsy also have serious issues with disclosure. We have a concern that they may not feel inclined to participate in any process that requires full disclosure of their condition. This is an issue of concern at present in regard to the physical and sensory database. It is a very serious barrier for members of our organisation. We are concerned about disclosure issues and the whole process as outlined in the Bill. We are also concerned that people may not access services they need for this very reason.

In regard to issues such as the service statement and the assessment procedure, the Bill needs to provide for an unambiguous right to an independent assessment. Other speakers have outlined this and we endorse it. The assessment needs to be reviewed at appropriate intervals and when a person's situation changes, as it does with an episodic condition, it would require re-evaluation at that point.

Although there is legislation relating to disability in education we believe there could potentially be overlap between the Bills. The legislation should be complementary in this regard. Children with epilepsy may be underperforming, on average up to two years behind their peers. They do not have access to neuro-psychological assessments because no such service is provided. They are not supported in the school system in regard to first aid procedures, particularly in terms of emergency management of seizures. It is a very serious problem in terms of children's access to education. When seizures disrupt school attendance children do not necessarily qualify for home tuition. There is limited provision in terms of special consideration for those taking State exams.

The provisions of both legislative measures need to be complementary and the appeals process must be independent and readily accessible. It is a lengthy process, as outlined in the Bill and one that is likely to actually deter somebody from appealing a decision.

We endorse what has been said in regard to the DLCG and the ten fundamental flaws about which we have grave concerns.

Chairman

I thank Ms Dunne. The next group is Headway Ireland — The National Association for Acquired Brain Injury. I welcome Ms Bernie Murphy, chief executive officer, and Mr. Ruaidhrí O'Connor, planning and development officer.

Ms Bernie Murphy

I thank the Chairman and committee members for the opportunity to make a presentation. Our focus is very much on the impact of the Bill on our client group. Headway Ireland works with people with acquired brain injury. We are currently the National Association for Acquired Brain Injury providing services around the country, primarily in Dublin, Cork, Limerick and Kerry with some additional outreach services.

For those who may not be aware, an acquired brain injury is a non-progressive acquired injury to the brain with a sudden onset. It can be caused by anything from a haemorrhage, tumour, stroke, road traffic accident or assault. In many cases the injuries are quite common. Other possibilities are encephalitis, which is a viral infection of the brain, or lack of oxygen, hypoxia. In 2002, for instance, more than 2,000 people were admitted to Irish hospitals with traumatic brain injury. There is no accurate categorisation of these injuries. Almost 3,500 acquired traumatic brain injuries after a road traffic accident or assault, and another 6,500 experienced strokes, brain tumours and haemorrhages. This represents quite a large number per head of population per annum.

While we welcome the introduction of the Disability Bill 2004 in general, we obviously have many issues with it. We regard the entitlement to an assessment of need and statement of need as fundamental rights for people with disabilities and their carers. Hence, we have a number of serious reservations about the Bill. The areas of concern include the definition of disability; the assessment team composition and expertise; the involvement of people with disabilities in the assessment process; resource limitations affecting service statements; the independence of the complaints process; and the value of the complaints process as constituted.

On the definition of disability, I am sure people have referred all morning to "a substantial restriction" and "an enduring disability". Within our client group, we experience people with mild, moderate and severe brain injuries. We look for the rehabilitation potential in people and they do not necessarily have to prove they have an enduring disability. There is a huge contradiction in this regard in terms of working with this client group and it needs to be addressed. One of our primary foci would be to return people to some level of normality following an injury since their disabilities are acquired. We propose that the definition recommended by the Disability Legislation Consultation Group is more appropriate. I will not read it out as it is too long.

It is critical that the assessment of needs be independent and be seen to be independent of the health boards. The assessment team must have a level of expertise sufficient to allow for a successful assessment of the acquired brain injury given the uniqueness and the complex nature of such disabilities. This is also very significant. Assessments should be carried out by an interdisciplinary team with specialist experience in the management of brain injuries. It should not be done in a generic sense. The team should include a psychologist, occupational therapist and social worker whose job would be to identify a person's rehabilitation, vocational, independent living and personal needs. The assessment process must also include the person with the disability and the person's family. The Bill states that an assessment officer "may" invite the applicant and it is important that this word be removed. It is essential that both the person with the acquired brain injury and his or her family are included in this process because the lack of insight and awareness is a serious issue when assessing an individual. Not including them can result in different responses.

The assessment should be carried out over a period of time. It must be taken into consideration that as people plateau or recover from an acquired brain injury, their behaviour and recovery patterns change. It is not just a once-off needs assessment that is required. If we are to comply with the basic principle that people with disabilities should be at the centre of all decisions made about them, the process must be inclusive, not exclusive. The assessment process for a person with a brain injury should be carried out over time to pick up cognitive deficits. This is quite important and requires the involvement of the family. There should be built-in review timescales operating on an individual basis, perhaps every two to three years.

Considerable restrictions apply to the service statement. The restrictions contained in section 10(6), whereby a person's eligibility for services under the Health Acts will depend on the "the practicability of providing the services identified in the assessment report" and certain resource limitation implications defined in section 10(6)(e) will render the value of the assessment of needs worthless if the recommended services cannot be provided. There is no point in affording a person a service expectation if it cannot be delivered upon. The resources needed to implement assessment recommendations must be provided for in this legislation. There should also be provision for a planning tool of some sort.

The ability of the chief executive officer, CEO, of a health board to overturn the recommendation of a complaints officer due to cost implications under section 17(11)(a)(i) and (ii), is not acceptable. The majority of complaints will most likely be concerned with the contents and limitations of the service statements compared with the assessment reports.

The complaints officers need to be independent of the health boards so that the process is seen to be truly independent and transparent. It is also important that people making complaints or appeals should automatically be informed of the availability of an advocacy process to assist them in the complaints process. It can be quite daunting for an individual with a disability to go through this process in the first place and he or she may need to be supported.

The definition, which needs to be changed, is critical and is a gateway to all services. The focus must be person-centred and it is critical that the legislation be rights-based rather than resource-dependent. We are available to work in partnership with interested parties to ensure that a rights-based disability Bill is passed that reflects the concerns expressed in our submission and the submissions of other organisations. We fully support the Disability Federation of Ireland and the Disability Legislation Consultation Group.

Chairman

That was an excellent presentation. I now call on Mr. Maurice O'Connell, chief executive of the Alzheimer Society of Ireland.

Mr. Maurice O’Connell

I thank the committee for the opportunity to speak to it. It is an opportunity for the Alzheimer Society of Ireland to highlight some of the main issues on which it reflected in regard to this Bill. I would like to talk about ageism, older people and disability.

The Disability Bill will have a role in addressing ageism in the disability sector at the institutional, structural and attitudinal levels. A key message from the Alzheimer Society of Ireland on the Bill is that all disabled people should have access to the rights bestowed and that the assessment process must disregard the age criteria. Age should never be a factor in determining an individual's right to assessment, treatment or eligibility to gain access to services.

Ageing is a process in the lifespan of an individual and therefore should not be ascribed to chronology. This is a real challenge for policymakers and service providers and will require structural changes to the way in which services are delivered. However, this Bill and the sectoral plans represent a vehicle for change in this area. I highlight this because the Alzheimer Society of Ireland recognises that more than 40,000 people have different dementias. Alzheimer's disease is the most critical and dominant.

We want to focus on ageism because the resources for those with dementia can often be marginalised within budgets under general services for older people. An increasing number of people under 65 have some form of dementia and their issues are far more broad and radical than they would at first seem.

The Alzheimer Society of Ireland recommends that the definition of disability, as set out in the Bill, be reconsidered. It should be more inclusive rather than playing the role of excluding people. The Bill's rights-based approach to disability should be reflected in the definition. The interpretation of the definition in practice is equally important in ensuring equity of treatment for all disabled people.

The Alzheimer Society of Ireland wishes to flag some potential issues concerning the assessment process and it recommends that these be considered before the enactment of the Bill. The nature of assessment is too narrow and is confined only to the health and educational needs of those concerned. Due to the multifaceted elements of disability as well as the significant interrelatedness of assessments of needs of people with disabilities, assessments must be carried out in a holistic way.

It is in the nature of some types of disability to be progressive and degenerative. It implies an increase of loss of function. The proposed assessment process needs to be able to respond when needs change. Therefore, continual assessment is required for people with dementia and related cognitive disabilities. In any assessment process pertaining specifically to people with dementia, the needs of the primary carer must be taken into account. In dementia care, the care partnership is crucial and the two partners have a range of needs which must be met. Often we find that the care partner has his or her own disability and needs a specific response. Moreover, because of the symbiotic relationship, the needs of both people in the relationship should be considered.

In regard to the service statement, the society recommends that the wording of the Bill is re-visited to reflect entitlement to services as a right and it not resource-lead. In regard to the complaints and appeals mechanism, the society recommends that the policymakers and legislators involved in the final drafting reconsider the need to have ultimate as opposed to immediate access for people with disabilities to the relevant quarter of the land and have their service needs met. Furthermore, they should review the independence element of the complaints and appeals mechanism as their independence may be called into questions since they are officers of the health boards who are charged with this responsibility. The legislators should also reconsider the notion suggested by the disability legislation consultative group for the introduction of the ombudsman model.

In regard to the sectoral plans, co-operation with other Departments in the development and co-ordination of service is extremely important. The monitoring and management of this process is crucial to ensure it is a success. It is a crucial step to promoting effective and efficient service provision and in ensuring a more seamless, joined-up plan for delivering services and supports to implement the rights-based agenda for people with disabilities.

The society sees that the personal advocacy service as set out by Comhairle in 2004 forms one of the elements of a broader need for advocacy services for people with dementia and their carers which would include the need for advocacy in primary, community and residential care and in legal and financial affairs. The society proposes to develop a range of volunteer-lead advocacy services which will complement the new Comhairle service.

Chairman

I invite Ms Siobhán Long of Enable Ireland to make her presentation.

Ms Siobhán Long

I thank the Chairman and the members of the committee.

The publication of the Disability Bill is long-awaited and much anticipated by all of Enable Ireland's stakeholders — service users, families, staff and our partners in mainstream settings, including education and employment. We very much welcome this opportunity to offer our feedback to the committee. We endorse and echo the views expressed by the DLCG earlier in this meeting regarding the flawed nature of the Bill.

The Bill makes reference to the health and education needs only of people with disabilities. It does not address independent living, advocacy, employment, accommodation, transport or social aspects of disability which are integrally related to both health and education. We appreciate that the Bill identifies the central importance of the sectoral plans from across Departments. However, having reviewed those plans, which contain no budgetary information related to the implementation of the Bill and in many cases identify in only the broadest terms, without identified timeframes, their commitment to supporting the Bill, we are concerned that cross-governmental commitment to the implementation of the Bill will be at best highly variable and at worst un-enforced. The constant references to "where practicable" raise questions about whether the individual with a disability has any right to enforce any aspect of this Bill.

Enable Ireland welcomes a number of proposals outlined in the Disability Bill. These include the impetus to ensure ownership and responsibility for the delivery of services to people with disabilities extends beyond the Departments of Health and Children and Education and Science. Nevertheless, this Bill appears to recognise the importance of embedding all legislative change across Departments. The assessment of need has a central place in the Disabilities Bill and we believe this to be both appropriate and congruent with the services we already provide. This model fits well with an integrated holistic model of service delivery, which in turn is driven by a social model of disability.

The establishment of a centre of excellence in universal design, under the auspices of the National Disability Authority, is a very positive step. This initiative may contribute significantly to the impetus initiated by our assistive technology services and the AT services of other agencies to promote best practice in information technology, assistive technology and industrial design and to ensure that design-for-all principles are adopted across the manufacturing, design and IT sectors. Ms O'Connor earlier recommended that the centre for universal design would be embedded and integral to the function of the NDA.

We also have a wide range of concerns about the scope and enforcement of this Disabilities Bill. The Bill seeks to address the assessment of health and education needs of people with disabilities. It does not propose a rights-based approach to services for people with disabilities, which is what the disability sector has been seeking for some years. Our key concerns are definition of disability, which is exceedingly narrow and may result in excluding individuals from protection under the provisions of the Bill. We are concerned with the use of the terms "substantial restriction", "permanent" and "enduring".

These definitions do not reflect the definitions adopted in the Equal Status Act or the Employment Equality Act, which are inclusive in nature. It would be most helpful if legislation included consistent definitions of disability in the interests of clarity and enforcement across all Departments, public bodies and service providers.

We are also concerned about financial commitment issues because no budgetary information has been furnished with the publication of this Disabilities Bill. The stated responsibility of each health board CEO to manage overall budgets in accordance with all demands across the health sector suggest that the Bill's attempts to provide for assessment of need may be overridden by budgetary restrictions. The Disabilities Bill should ensure that funding is ring fenced and not subject to the idiosyncratic demands placed on any particular health board region by other health stakeholders. It should also be shared across all relevant Departments so assessment of need in respect of employment is ascribed to the Department of Enterprise and Employment, and so on.

Our concerns regarding assessment of need are that the details of the assessment, complaints and appeals procedures are unnecessarily complex and confusing. Moreover, an emphasis has been placed on a reactive system focused on complaints, rather than on proactively providing appropriate and sufficient services to ensure that fundamental needs can be met. Currently, many services are available on a very limited basis to people with disabilities. These include independent or supported living, assistive technologies and supported employment services. Given the limited nature of the Bill's stated scope and the current shortfalls in provision of services, it would appear that the assessment of need is likely to be curtailed to take account of only two facets of an individual's needs, unpredictable based on the available budgets of a particular health board in a particular year or at a particular time of year and occurring in a vacuum where service provision post-assessment is absent or limited.

Further concerns with regard to the assessment of need include the provision that assessment of need must begin within three months of referral, but no end point is specified. This lack of clarity hints at the possibility of an open-ended assessment, with a consequent lack of clarity around implementation of services post-assessment. The Bill makes no provision for picking up gaps in service availability to assist service planning. If an individual's service statement only includes services which are available, then those other services identified as requirements in the assessment of need will remain unmet and risk not identified for future service planning and delivery. The proposed assessment, liaison, complaints and appeals officer roles require further clarification. What will be their qualifications and ambits of responsibility? As employees of the health board, how will they ensure decisions are binding and that assessments of needs are translated into meaningful action? What does the independence clause mean for assessment officers and in what way can a direct employee of the health board act independently while representing his or her employer? We echo the point made by NAMHI that responsibility for appeals should lie with another Department.

The complaints procedure only seems to apply if and when an individual secures an assessment. If a person is deemed not to qualify for an assessment, it is unclear if he or she can make a complaint and, if so, what form the procedure might take.

We have included an appendix with our report that details other concerns we have on the assessment of needs. The profusion of the phrase "where practicable" throughout the Bill suggests that the assessment of need may not result in any enhancement or initiation of service delivery post-assessment. It is also unclear if the same definition of disability is assumed for public sector employment as is included at the start of the Bill.

Those are our serious reservations about the Bill. We hope today's proceedings will go some way towards informing future deliberations on its progress.

Chairman

Just what I was going to say myself. I invite Dr. Angela Kerins, Ms Frieda Finlay and Ms Claire O'Connor to appear before the committee.

Deputy Stanton

That was a most interesting presentation. What does the Disability Federation of Ireland think about section 5? Are the voluntary bodies which provide 80% of the services covered by the legislation? It has been said assessment only covers health and educational needs. Can we tease this out? If that is the case, other needs might not be covered by the legislation. Qualification for assessment should also be examined. A person or someone representing him or her must say he or she has a disability. Therefore, he or she could be caught in a loop before even starting.

I cannot see how the Bill will lead to the ring-fencing of services. Headway spoke about the assessment team. In the Education for Persons with Disabilities Bill the assessment team is defined. A specific person has responsibility for putting it together but I cannot see that mentioned here. Also, is the complaints procedure too cumbersome?

Will all of the groups represented here suggest amendments to the Bill? I am concerned that it may end up being amended repeatedly on Committee Stage. Can it be amended? It is so complex that tampering with one part of it in a fundamental fashion will have a knock-on effect and there will be a complicated mess unless this is done properly. If the Government introduces amendments on Committee or Report Stage, we will not have time to assess them. Would it be better to start again? This has occurred to me as the debate has progressed. I said in the Dáil that I did not want that to happen but so many basic flaws have been pointed out today that I am now unsure. Dependability on resources runs through the Bill. Could someone please explain section 5 to me?

Dr. Kerins

The most important point for the disability sector is that we end up with robust legislation that will promote the rights of people with disabilities and provide them with services within an agreed timeframe. We wish to continue our engagement with the disability legislative consultative group, the Minister and his officials to see if we can achieve significant movement in the ten areas mentioned. We hope to have that meeting soon and will be able to say more about it afterwards.

This has been a significant day for the disability sector. Time and again there is uniformity across all of the organisations on key issues that must be addressed. I asked the committee to take these on because we have been talking for years and really hope the committee is listening. It forms part of the consultation process in which I am trying to drive the ten points home. Within these, the significant issues can be addressed. There are others but I want to promote the seriousness of the ten points the DLCG has made on this legislation.

Mr. Dolan

If the matter with which we are dealing was not so serious, I would suggest that section 5 was written by whoever wrote the script for "Yes, Minister". It is turgid in the extreme. If people have something to say, they should say it. The language in an Act of Parliament should be clear, whether we like what it states. We should, at least, agree on what it states. I do not read Bills for a living but this entire Bill is difficult to read. An attempt should be made to make it clearer and more comprehensible.

All of us are involved in public service of one kind or another, whether we are in voluntary bodies, private or statutory organisations. Our remit is to serve the public or some section of it. We should not define public service by the governance of the organisation but by the function.

Four or five officers are involved in the complaints system outlined in Part II of the Bill. A person might end up going round in circles. Part 3 provides for a complaints officer and an ombudsman. The head of the body appoints a complaints officer who listens to complaints, deals with the matters and makes a determination. If the punter does not like it for some reason, he or she can go to the ombudsman. That is straightforward and it is known from the last two decades of experience with ombudsmen that they deal with matters in an independent way.

If the Bill is to be constructed again, it must be a root and branch exercise rather than simply panel beating it into another shape. The first principles need to be right and clear. Putting amendments and nuances here and there is not the best way to achieve this. This will leave a confusing situation of people not sure what provisions are related. Some coherence needs to be introduced in the Bill. This would be a huge challenge to any Government. Our system is not well geared to doing this and it will be difficult. However, it is important that the Bill is properly calibrated at the start of the process.

Deputy Lynch

Last week when the Bill was introduced in the Dáil, I felt it would have been better to have these hearings and then proceed with the Bill. After a consultation process for three years, one imagines that some element of the Bill would have been right. I am astonished that the Bill is so bad and that such convoluted legislation could be put together. I am not into conspiracy theories as I believe such results are usually accidental. However, with this Bill it must have taken some considerable time and effort to get it so wrong. I am glad these hearings are taking place.

How does one ensure that hidden disabilities, such as epilepsy, Alzheimer's disease and brain injury, are covered in this legislation? How can one do an assessment of needs in the case of Alzheimer's disease when the patient could be at a particular stage of the disease? Knowing the difficulties with insurance and employment that epilepsy sufferers have, how can one expect them to come forward? When I spoke on Second Stage of the Bill, I said it was not possible to amend it. As the various stakeholders have pointed out, if one element is amended, it has a knock-on effect on another. This Bill is similar to starting on a greenfield site. Getting it right is the primary concern. In five years' time, we do want to be sitting at this committee saying we got it wrong. After a three year consultation process, it is possible to get it right.

Mr. Aylward

One matter to which no one alluded concerns the codes of practice and the access to buildings and services. The Bill states that the Government can ask the NDA to come up with codes of practice. However, one concern among our members is that the Government is not required to accept the codes of practice drawn up. There will be differing legal opinion on whether the Bill can be amended. Any rights-based disability legislation must have three key elements. It must enable persons with disabilities to live with dignity and freedom. It must enhance their quality of life in social justice, equality and economic rights. It must enable them to live independently with dignity, privacy and the ability for them to reach their full potential. The Forum of People with Disabilities believes that the Bill as drafted will not achieve those three elements.

Mr. Howard

I would be loath to withdraw the Bill though I see the rationale for such action due to its fundamental flaws. Having regard to a timeframe, with the withdrawal of the 2001 Bill we had to wait until 2004 before an amended Bill was introduced taking into account the equal citizens document with its straightforward language and proposals. I emphasise that these were compromise proposals bearing in mind their capability of being implementing and the chances of the Government taking them on board. For that reason, I would prefer to struggle with the Bill as it is and try to amend it. The amendments are contained in the equal citizens documents. We do not have to go back to the drawing board again. The reasonable, favourable and acceptable definition of disability in the Equal Status Act 2000 can be lifted into this Bill. If the definition is sorted out, everything else will flow from it.

The then Minister of State, Deputy O'Dea and the Taoiseach informed us that multi-annual funding for the disability sector would be ring-fenced. As a former civil servant involved in drafting the Mental Health Act 2001, I find the wording of section 5 unbelievable with so many escape and shut-out clauses. That is, if one can get to the bottom of the meaning of the term used in the section. I do not know the intention of the person who drafted that was but it is an escape from responsibility by the draughtsmen to implement what was promised by Government, that multi-annual funding would be ring-fenced for disability services.

There are quick resolutions to the fundamental flaws of this Bill and they are set out in the equal citizens document. There is no need for a separate redrafting exercise.

Deputy Hoctor

I thank the groups in this phase of the hearings for bringing a different but important slant to the issues, which I certainly appreciate. I am conscious that when a person goes for assessment, he or she may not be able to represent his or her situation. The nature of the assessment is driven by the carer or family member who lives with the person and communicates what is needed because that person best knows those needs. Does Mr. O'Connell believe the Bill needs to be strengthened to ensure the family member or carer is clearly recognised if the person is not able to articulate his or her needs? Will Mr. O'Connell elaborate on what he would like to see included in the Bill to cover the carer's entitlements?

There has been a negative undercurrent to the discussion today, some of it understandable anger, disappointment and frustration, but that should not be an end in itself. It does little to serve those whom this Bill serves. We must move beyond anger and despair. We are all in this together and all need one another, the legislators and those on the ground working daily with people with disabilities. I worked with people with disabilities in a voluntary and paid capacity so I am not coming in out of the cold to speak on this but while anger, despair and disappointment are real feelings we must move on from them. We can work together to achieve the clarity needed on some of the ten points listed and draw up amendments to deal with those. We look forward to meeting the other groups.

Chairman

Mr. O'Connell can respond to those points later but Ms Finlay may respond first.

Ms Finlay

Apart from anger and everything else there is a great deal of confusion because one wonders why people ask for consultations when they do not listen to the outcome of those consultations. This is about investing in citizens. This Bill seems to have put up rather than removed barriers. I hope it can be amended because we have waited so long for legislation that will give us some dignity within our communities and societies. It is very important that we achieve a good Bill that will improve the situation for people with disabilities.

Ms Dunne

I concur with Ms Finlay's remarks. It is imperative to take the time to see if the Bill can be amended in the way that it needs to be, given the feedback to the committee today. It is not satisfactory to most of those working in this sector. There are many more areas of concern than of content. A root and branch examination of the Bills fundamental principles is required. Brainwave and the people it represents had looked forward, and still does, to working to improve the Bill and to make further submissions along that road.

Deputy F. McGrath

I welcome all the submissions. Those from the disability groups were clear, professional, honest and very precise. This was a rewarding morning's work. I learned a great deal even as the parent of a child with a disability. It was a positive, constructive morning during which we heard many new and fresh ideas. It is also an example of our democracy working whereby disability groups come in to make submissions and deal with legislators but it is up to us to listen to these groups. I will strongly support their ten major concerns and amendments. If the resources are not available in the services people will not have rights. I am open on the question of whether to amend the Bill or introduce a new one. If the disability groups believe they can change this Bill by dealing with those ten issues I will support them. Overall, this was a very valuable morning to hear professionals, parents and disabled people telling us the way it is.

Mr. O’Connell

The assessment process is complex. Someone with dementia who has language problems, memory problems etc. makes it all the more confusing. There are several issues here. One, which is not directly related to this, is the need to put in train an awareness process for early diagnosis. The focus for primary care should be on resources and education of medical professionals to highlight the necessity for earlier diagnosis. If that happens the person with dementia would be able to speak about his or her needs. It is essential to start from the person. As the cognitive disability progresses there are difficulties in communication and an advocacy programme must be taken into account. It is not sufficient to focus fully on the responsibility of the carer who might be in denial because of the stigma attached to this. The carer however must be helped to face some of the realities this presents. A programme of advocacy on behalf of the person with dementia and the carer will overcome some of those difficulties.

In the health supplement of The Irish Times today we focus on the plight of some carers. One of the points highlighted is that 78% of people caring for others are women and mothers. In other words they are the meat in the sandwich between the older generation and the younger. We need to be aware in terms of their entitlements that often they are single daughters who have given up a career to care for their parents. We have a responsibility to reflect the kind of sacrifice they make to give dignity to their parents.

Ms Murphy

Consistency of definition is important and needs to reflect an understanding of disability. It is a challenge but it needs to be all-encompassing. It is a gateway to assessment and services and so is critical. It is also linked to how one qualifies for an assessment. That needs to be clear-cut. The sectoral plans focus on health and education but if we are talking about a person-centred or holistic approach it should be much more encompassing. The skill level of the assessment team is also important because it is not about generic disabilities. There needs to be an understanding of specific disabilities across the board. As ever, funding is essential. There must be investment in resources to provide these services. One cannot set up expectations and not deliver to people with disabilities. The impact on, and the role of, the family are very important factors too.

Senator Terry

This has been a good morning's work, certainly from our point of view. It has been a great opportunity to hear all the various concerns and it is now up to us to address them as best we can. We are starting from a very low base in terms of providing the rights based legislation which we all wanted, and must try to make the necessary changes to ensure the funding will be there to deliver the services by means of the skilled staff which we all aspire to have. We must consider how we can bring about that situation.

Regarding qualification for assessment, Ms Long made one point in particular. A situation whereby someone is deemed not to qualify for an assessment is quite worrying. Where then does such a person go? That is a failing in the Bill. I agree that far too often we read in the Bill the words "where practicable". This leaves the delivery of services to chance. My fear is that if the funding is not ring fenced and is not adequate rather than "appropriate", people with disabilities will again be at the bottom of the list.

While Fine Gael will make every effort possible in the Dáil and Seanad to have our amendments accepted, I must point out to the group that where an amendment would result in a charge on the Exchequer, it will be ruled out of order by the Minister. The Opposition's hands are therefore tied if we want to get these amendments accepted. We will be asking the Government to make the necessary changes wherever an amendment would bring about a charge on the Exchequer. If the Government does not do so, amendments tabled by the Opposition may be ruled out of order. This is an important point for all of us to bear in mind.

Ms Long

While I appreciate that the legislative process cannot be tied directly to budgets, the current debate is being conducted in a vacuum. Without information about the financial support necessary to enact a Bill of this nature we are talking in a vacuum. If we had some indication of the level of commitment to ensuring that at least the basic points of this legislation would be implemented in an equitable manner, we would be in a better position to predict its effectiveness. Because there are so many shortfalls in current provisions need, with the focus primarily on the assessment of need rather than on service provision, we are looking at a long road ahead of us before we get to a point where people can receive the services identified in that assessment of need. That is a key concern of ours.

Mr. Freyne

Since the last Bill failed, we have gone through, over the past three years, a consultation process set by the Government through the DLCG. All the issues raised today are in one form or another referred to in the Equal Citizens document produced by that group.

I believe it is possible to amend this Bill and I hope that will happen. To engage in a start-up process all over again, as has been suggested in some quarters, would mean that we would have to wait another three years. In the area of intellectual disability we are dealing with what is possibly the most vulnerable section of our population. We need to invest in their future and provide those people with adequate levels of service. Nobody expects this to happen overnight. We have lived with the situation for many years. It has improved, but there is a huge gap between the need for services and their delivery, as has been alluded to many times today. We are talking of the quality of people's lives.

I sincerely hope the Government will look again at the Equal Citizens document. The ten points raised by the DLCG are answered in that document. This is what we were asked to do. We have gone through the process. We ask the Government to please listen to us, to bring forward the amendments which will make the Bill workable, and enact it. One of the ten points made was that a fundamental review in about three years' time is crucial in order to see how the legislation is affecting people's lives and whether it is impacting to the good. That would help everyone involved and would make the point that we are not just service providers but advocates too.

Senator Kett

I find myself in a unique position this morning in that I am present in my capacity as a committee member yet in my other life worked for 20 years in the disability sector, and still do. I agree fully with Mr. Brian Howard. With a level of flexibility and realism in regard to all of this we can overcome the need to abandon this Bill altogether. There was a lot of good in the 2001 Bill and there is much good in the current Bill. It would be a shame if we were to find ourselves back here in two years' time going through the same process.

Someone stated that the definition of disability in the Equal Status Act is the one we should accept. I wonder if that is agreed right across the board and if that set of words is the one we should be considering as a re-defined definition. If so, we should know that this is what we will be debating. I believe that ring fencing will not be an issue because it has been stated publicly by the Taoiseach and others that ring fencing is guaranteed along with the multi-annual funding. They would not have made those statements lightly if they then had a difficulty with those points being somehow incorporated in the definition of the Bill.

Listening to the Age Action Ireland representative and to Mr. Maurice O'Connell, we have found another set of people whom we need to consider in a different way because they are neither disabled nor fully able-bodied. They are in between. We are talking about the ageing population. The medical definition needs to be looked at in that regard because we do not ourselves describe the ageing as disabled people. We may look at them as geriatric, but not disabled. We need to look into that area.

We will do all in our power to promote the views of the witnesses before the Minister and help fulfil their aspirations.

Ms O’Connor

To be the sweeper is to be in an unenviable position. In the National Disability Authority submission, which contains 57 pages, the appendices set out in detail the vision communicated in the commission's report in 1996. That vision was communicated in a holistic whole-of-life needs assessment. That is the building block in the current Bill and the starting point for an equitable allocation of resources. However, there is one countervailing tension which has not surfaced in today's discussions, and that concern is raised in the NDA submission. We are concerned that progress on mainstreaming in health and education will be limited by the fact that people must be pushed through needs assessment, for which this Bill is the gate-keeper. Personal social services are in fact delivered under the health budget. Areas such as housing, comfort allowances and other assistive devices, all of which have to do with empowerment in social and employment settings, are funded by the health budget. We would not like the pressure on containing health budgets to have the result of constraining the full empowerment of people with disabilities.

The NDA is a statutory body born of the Government's mainstreaming policy with a set of advisers in five clear policy areas. The NDA works with everybody in the sector to make this the best Bill possible. I thank all for their contributions. We are also here to serve the committee members as legislators.

Chairman

I thank everybody for attending. As chairman of the committee I learned a great deal. I know the delegation has been discussing the ten important points set out by the disability legislative consultative group with the Minister. From most of what I have heard today, the definition of disability certainly needs to be tweaked to take account of those suffering from Alzheimer's disease, epilepsy, depression and several other non-enduring disabilities. However, I am sure in consultation with the groups represented the Minister will be able to reach a solution that may not be the ultimate panacea for everyone but with which we can work. I thank everyone for coming.

Several other groups will be appearing next Tuesday, 16 November 2004. If the discussion is as fruitful as today's, it will be extremely worthwhile. I look forward to it immensely. If any of the representatives wish to come along, they will be more than welcome to sit in the Visitors Gallery. If any other group not appearing today or on Tuesday wishes to lodge a written submission, it is invited to do so. Perhaps the press might make this known. We are unable to devote another day to hearings, but we will certainly take written submissions fully into account.

I thank the representatives once again for all the time and effort they have put into their submissions and attending today. This is very much appreciated and has been tremendously useful to every member of the committee in our deliberations in the Oireachtas on the passage of the Bill.

The joint committee went into private session at 1.55 p.m. and adjourned at 2 p.m. until 9.30 a.m. on Tuesday, 16 November 2004.