Disability Bill 2004: Presentations.

I welcome all the groups which have come before the Joint Committee on Justice, Equality, Defence and Women's Rights to give us their advice on the Disability Bill 2004. It is of great value to members to hear the contributions of delegates in order that they will be able to participate in a more informed manner in the debate in the Houses. I thank everybody for coming.

Let me introduce some members of the joint committee. They are Deputy Stanton, Fine Gael spokesperson on disability matters; Deputy Lynch, Labour Party spokesperson on disability matters; Deputy Hoctor, Government convenor for the committee, and Senator Cummins, Fine Gael spokesperson on disability matters in the Seanad. Deputy Murphy is the Vice-Chairman of the committee and the Fine Gael spokesperson on justice and equality matters.

The format for today is as follows. We will hear the presentations of all of the groups, each of which will take between five and seven minutes. I do not want the groups to take it badly if I cut them off after seven minutes. I ask them to stick to the seven minute time frame. If a group can make its presentation in five minutes, that is all the better. At the end of the day there will be comments and questions from each of the members, to which the various groups can respond. At that time, there will be one person from each group present and if there is room for others, so be it. We hope that interaction will result in all of us being fully informed on what the groups are doing.

We received the written submissions. The groups can take it the written submissions are read or if they are not, that they will be fully read. I would ask the groups not to go through the submissions but just to point out the highlights so that we can get through the proceedings in a timely manner.

I am delighted to call the representatives of the Irish Senior Citizens Parliament, my good friend, Mr. Michael O'Halloran, who has been here many times, and Ms Sylvia Meehan who over the years has done Trojan work for various groups. You are both very welcome.

Mr. Michael O’Halloran

We will split the presentation in two parts. I will take the first part and Ms Sylvia Meehan will take the second. I will then make a brief concluding remark.

This is complex legislation. When I read in the newspapers that the members were getting additional assistants, I thought that if there were any left over we would like to have some of them in order that we could do justice to this presentation on such a large Bill.

I thank the committee for the invitation. We are not expert in this area but our concern arises from our concern for our members, older people, but also for their children and grandchildren. Often older people have disabilities and for that reason we have an interest in the Bill.

I have a number of brief observations to make. I will focus on issues with which we are concerned. The first issue is with section 17, which amends the Broadcasting Act and gives recognition to people who have a hearing or sight impairment. While this is a welcome provision, if I was a blind person I would be annoyed with this Bill. I am sorry for starting off in a negative way, but I must point out that the Bill proposes that there will be certain provision made for people with a hearing impairment and that is spelt out in terms of teletext, subtitling, etc. It just mentions that blind people will also be helped to enjoy television but it does not say how. That is a serious omission. Audio description, which is one way of helping blind people, should be mentioned in the Bill. At least that recognition should be given. The National League of the Blind might not thank me for saying this, but if the committee wants to use that great cop-out term in legislation, "as far as practicable", which I will not deal with either because that is another complex area, it could be inserted in order to satisfy those who have worries about how this would be delivered.

Blind people have rights like everyone else. The right to greater enjoyment of a television programme, by not only hearing it but getting these audio descriptions, would greatly enhance their position, and I must draw that to the committee's attention.

Another issue which confuses us, because we do not have these assistants and researches, is the definition of disability. We are worried and concerned that a disability, which will not be recognised now for services as a disability under the Bill, can be progressive, can continue throughout a person's lifetime and, without getting proper medical services, the person's quality of life can deteriorate. There must be clear guidelines as to what is meant by disability so that everybody knows where he or she stands on this issue.

It seems the Bill is mostly concerned with health and education. There are other areas of difficulty for people with disabilities such as housing and transport. These issues are not getting enough attention and are not dealt with in the Bill. I will hand over to Ms Sylvia Meehan. I hope we are within our time limit.

Ms Sylvia Meehan

We also want to raise the question of personal advocates and appeals against decisions made by the director of advocacy services. We welcome the provision of personal advocates and the provision that persons other than those employed by Comhairle could be appointed as personal advocates, although it is not clear in the Bill from where these people would come. There is a wide range of people, many of whom are in the older age group, with skills and knowledge which would make them suitable to play and advisory and advocacy role. We hope there will be advocates of that background appointed who will be sensitive to those who seek their help. There should be a provision in the Bill stating the area from which these advocates can be recruited. We know there are a number people in the older generation who would be particularly suitable.

Our main concern on this issue about advocacy is with the appeals system. Under the Comhairle (Amendment) Bill 2004 it is proposed that in the event of a qualified person disagreeing with the decision of a director in his or her application for advocacy services, this can then be appealed to the chief executive of Comhairle. This appeals system should be more independent. To get greater confidence in the system, an appeal system set within the same organisation that has made the decision could lead to unnecessary tension and could weaken people's confidence altogether in Comhairle. It would be to the advantage of both that organisation and strengthening the confidence of the appellants that that should be looked at.

We also believe there should be an appeals board, with involvement by Comhairle but with experts representing the service side of the issues. These experts should be people who are familiar on a practical every day basis with the services side. There should also be a person to represent the disability sector. Such an appeals system would be more independent and would give rise to greater confidence among people with disabilities in their dealings with Comhairle. It is a question of confidence for appellants and people who apply for services and for qualification. It is essential that they should have a clear, obvious route to getting strictly independent advice.

Mr. O’Halloran

The last point is about resources. I will not go into the great philosophy of what rights are about but if one confers rights, one must adequately resource the implementation or recognition of those rights. We draw that to the attention of the committee. Legislation which, when suitably amended, is good could be brought into disrepute if it is not given the necessary resources. We just want to make that point.

Thank you, Mr. O'Halloran. Your time-keeping is an example to all of the organisations. I now call on Ms Julie Healy, the national support group co-ordinator who represents AWARE, and Ms Sandra Hogan, the public relations officer.

Our first comment refers to Part 1, section 2, the definition of disability. Since depression, the illness with which we are concerned, occurs as an episodic illness, the definition "of an enduring, physical, sensory, mental health or intellectual impairment" may not include depression or depressive illness. As we have said, depressive illness is disabling and to have one's thoughts, mind and perception of what is happening disabled is surely serious, yet this definition does not include that. Further on in Part 2 disability is defined for the purposes of this Part to cover people for whom a substantial restriction is or is likely to be permanent. People may suffer from ongoing depression throughout their lives. However, one could not say they suffer from permanent depression. Permanent depression would be an unthinkable and unbearable experience. We have serious concerns about the definition of disability in the Bill.

Our second point refers to section 7 which provides for the appointment of assessment officers by each health board. We question whether an officer of the health board would be able to carry out an independent assessment without being constrained by his or her knowledge of the available resources. The assessment of needs must be broad and not confined only to health and educational needs but to the holistic care of the person concerned. People may need to be labelled. Again, this gives us cause for concern about the Bill. People will have a primary health concern but other factors may inhibit his or her enjoyment and ability to live life to the full.

Section 8(1) provides that "the person may apply to the health board in whose functional area he or she resides for an assessment or for an assessment in relation to a specific need or particular service identified by him or her". We are concerned that this will not take into account those who are homeless and mentally ill. We think it could exclude the most vulnerable in society. I was at a function in the Mater Hospital recently at which a well known consultant psychiatrist made the point publicly in the presence of the Minister of State with responsibility for health matters that she could guarantee that somebody would present in the accident and emergency department who was homeless and psychiatrically ill and that nobody wanted to take on the responsibility of dealing with that person because of discharge difficulties and the difficulties associated with moving him or her on. The effect of section 8 would further exacerbate the person's vulnerability because he or she may not have a place to live or fall into any catchment area. This needs to be considered seriously.

We consider that a waiting period of three months from the date of a request for assessment to having it carried out is far too long. It would cause unbearable suffering for a person in the acute phase of a depressive illness to wait for three months before the commencement of assessment. Depression is a treatable illness, if treated in time. We know that depressive illness is closely linked to suicide and that between 80% and 90% of suicides can be traced back to depression. Last year 444 people committed suicide. This means that approximately 350 of those who committed suicide lost their lives to an illness that could have been treated.

The Bill is not convincing in its commitment to bring about equality for people with a disability. Its scope is not broad enough. As I stated, it needs to be broader than health and not restricted by financial or geographical concerns. The European Commission reported earlier this year that by 2010 mental illness would be a greater and more widespread problem than heart disease. Depressive illness is a lonely and isolating condition. Each member has an ideal opportunity through the Disability Bill 2004 to open a door to those who live their lives in a world of stigma and misunderstanding, a world of exclusion.

I thank Ms Healy for her contribution. I call the representatives of The Anne Sullivan Foundation for Deafblind. I remind those who were not here earlier that the time allocated to speakers is five to seven minutes. I also remind them that while Members of the Oireachtas enjoy parliamentary privilege, this does not apply to them. I invite Ms Grace Blake to introduce her colleagues and make her presentation.

Ms Grace Blake

I apologise for our late arrival. We were delayed along the way.

I thank the Chairman for giving us the opportunity to make a presentation. Ms Finola Loughney is the chief executive in charge of The Anne Sullivan Foundation for Deafblind, while Mr. Bruce St. John Blake is the legal adviser who also offers moral support.

The Bill offers a landmark to get things right. It has had a chequered history which in a way bodes well because it shows a political will to listen and implement the changes recommended. Its title presents the first difficulty. My daughter, a law student, tells me it is not very politically correct. I tell her I am never politically correct. She suggested the following: "the differently abled peoples Bill" or "a people with disabilities Bill". She feels the title is very blunt and I agree with her. In many cases people's disabilities are not genetic but acquired later in life, through accidents, for example. The word "disability" puts people in a pigeon hole. This should be looked at.

Section 5 provides for the allocation of funds to Ministers and their obligation not to exceed their funds. I do not like the preoccupation with finance as the focus should be on people and their needs. I know this is engendered by the expensive court cases and the massive expense arising from them, for example the Sinnot case. Such cases would not be necessary if the law was in place in the first instance. It is the function of the Oireachtas, not the courts, to make law. People should not have to resort to the courts because they do not do a good job on it as their function is to interpret the law. Mothers are very persistent on behalf of their children who do not have all the strength they should have. Everybody knows about Christy Browne whose mother had no education and a large family but by her sheer persistence and belief her son had something, she kept at it and we know what he achieved. The Sinnot case is similar. We know the fury of a woman scorned but it is not on the scale of the fury of a mother who thinks her child's rights are being scorned. I belong to that group as well as being chairperson. It is the needs of people on which we must focus; the money will come.

The Minister has promised to be generous. It is important that the money is not dissipated by yet more committees and administration. On page 3 of the explanatory memorandum, under section 6 which defines the key terms used in Part 2 of the Bill, it is stated "education service" includes education in a recognised school, as well as certain other programmes of education, training, or instruction for persons with disabilities aged over 18 years but I can find no reference to the age limit in the appropriate section. This is very important because things do not change for people with a serious genetic disability when they reach 18 years. They will still have educational needs and should be able to avail of education services such as those provided for the deaf-blind. I thought we were correcting the deficiency of services for the disabled ceasing for those over 18 years. However, this is not provided for in the Bill and it is very important that it is. I am not sure if it is simply an error.

On the question of entitlement to assessment, will those within the system be assessed compulsorily straightaway or will one request it or will it arise when something new is required? We would like answers to these questions because it impinges on us.

We are concerned about the protection of care staff as regards assembling information. Who will give this information which is highly confidential for those unable to communicate for themselves? Will there be protection for the care staff who will be asked for this information and who will have to provide it? There is provision in the data protection Act but care staff work extremely hard. They are hard to find and when they are, they are fantastic. I would like to ensure additional pressure is not exerted on them by anything intended to be only for the best.

In this day and age there is no excuse for lack of access to buildings, whether new or old. Although derided by many, I hold Iarnród Éireann in high regard. It can produce a portable ramp at every train station. I have taken people in wheelchairs on and off trains and the staff merely smile and say, "It is not a problem, madam." Why is it not possible to provide such ramps at buildings too old and historic to be altered structurally? Such steel ramps are easy to acquire.

On Part 5, the explanatory memorandum mentions a 3% norm for employment for people with disabilities in the public sector. This is far too conservative. Some 10% of people have a disability. Therefore, one could increase the target. When I was much younger and a student which was not yesterday, I lived in the North where the corresponding figure was 10%.

Why does this measure apply to the public sector only? Why is it not obligatory in the private sector? Would the committee consider a measure such as a tax incentive to encourage the private sector to take on people with disabilities? Just because a person has only one arm does not mean he or she cannot man the telephone or do many other tasks. Some years ago there was a tax incentive for those who took on a person from the long-term unemployed list. Something similar could be devised to encourage people in the private sector to take on a person with a disability. The measure should not be confined to the public sector.

There are considerable employment prospects for people with a hearing impairment. They should not be in dead end jobs.

As a society we will be judged by how we treat the least of our brethren. We should seize this opportunity. This should be a Bill of Rights for people with a disability in the 21st century. We will not easily be given this opportunity again. As a society we had a caring reputation. We could redress the balance and rectify the damage done in recent years. With all the moral strength I can muster, I urge the committee to seize this opportunity and let us not be found wanting.

I now call the representatives of the Genetic and Inherited Disorders Organisation, Ms Judy Windle and Professor Andrew Green.

Ms Judy Windle

I thank the committee for giving us the opportunity to be here. I am accompanied by Professor Andrew Green, director of the National Medical Genetic Centre.

The Genetic and Inherited Disorders Organisation is not well known. It is an umbrella organisation for voluntary groups concerned with genetic and inherited conditions. It is a company limited by guarantee and a registered charity. The directors are representatives of the Friedreich's Ataxia Society of Ireland, the Muscular Dystrophy Society, Huntington's Disease Association, Fighting Blindness, William's Syndrome Association of Ireland and the Lupus Support Group. The organisation also has links with many others interested in genetic conditions.

The organisation was set up in the late 1980s, principally to lobby for a medical genetic centre. At that time there was no such centre in this jurisdiction, although there was one in Belfast. The Tierney report, the result of a ministerial committee, was published in the early 1990s and eventually the National Medical Genetic Centre was set up in 1994 in Our Lady's Hospital for Sick Children, Crumlin, of which Professor Green is the director. He is also a distinguished clinical geneticist and holds the chair of medical genetics in UCD.

Because of our role, we have concentrated on Part 4 of the Bill which deals with genetic testing. We were glad these provisions had been included because the dialogue group had recommended that they be dropped, that the area of genetics was so complex that separate legislation was needed. While we would welcome separate legislation, it raises the question of when we would have it. In the meantime we want protection. Therefore, we are glad the relevant sections are contained in the Bill.

We have a few reservations. There is provision in Part 4 for the Minister to review the legislation before the expiration of 2014. While section 41 deals with this provision, it only deals with revision in the case of persons applying for insurance. It does not seem to provide for revision in the case of persons applying for employment. We do not know why this is so. We want both to be dealt with. We also advocate that when the time comes for drafting the regulations, the Minister who will have power to consult various bodies under the relevant sections consult our organisation because our member organisations have first-hand knowledge of the problems experienced by people with genetic conditions but, more particularly, Professor Green, the expert on clinical genetics in Ireland.

Professor Andrew Green

This is important legislation — I am referring specifically to Part 4 which deals with genetic testing — because it brings Ireland into line with and, in many instances, beyond the genetic testing regulations in place in other countries. Our centre does approximately 8,000 to 9,000 genetic tests per year. Therefore, this is a reality, not an abstract concept.

Genetic conditions affect about 2% of the population, a significant percentage. For every individual with a genetic disorder there may be many others at risk of developing it. This issue comes up, not just for those with a genetic condition but for those healthy relatives who may be at risk of developing the condition. When they come to us to seek a genetic test, they have major concerns about the implications in terms of insurance. It is a common concern. I personally know of quite a number who have chosen not to undergo genetic tests, although it is in their own interests to do so, because they have such concerns. This legislation should relieve them.

The Irish Insurance Federation operates a voluntary code which expires next year, which is limited and which does not have any teeth. I am aware of some breaches. Therefore, the current practice cannot continue. The legislation will solve this issue.

The Part 4 provisions apply both to insurance — a major issue — and also the restrictions on the use of genetic information in employment. As the latter may be an important issue for the future, I ask the committee not to leave the matter of employment aside. Further to what Ms Windle stated, I emphasise that not only is it used for genetic testing but section 41 refers to ministerial regulations on the use of the family history of applicants for insurance cover. While everything else in Part 4 refers to both insurance and employment, section 41 applies exclusively to insurance. As I can see this issue coming to the fore in employment as well as insurance, I encourage amendment of the legislation to provide for the inclusion of a reference to employment.

It is important to remember genetic tests are different from other medical tests. They do not concern something one can do such as changing one's lifestyle. One is born with genes. Therefore, they are not changeable. Genetic testing has implications not just for oneself but also for one's family. Genetic test results should be considered separately from other forms of information because of those qualitative differences.

I am glad this legislation has come to fruition. Provision is made for a review in 2014 by which date there are likely to be more genetic tests. Therefore, the review should be used to further strengthen the legislation.

I am sure various amendments will result from that presentation. If Professor Green has the format of an amendment, it would be appreciated if he send it to us.

The Huntington's Disease Association of Ireland is represented by Ms Cathrine Paradise, chairperson, and Ms Bernadette Moran, development officer.

Ms Catherine Paradise

We supported the previous Bill and were impressed by the team which had worked to make it possible. They gave us a fair hearing and included the section on genetics at our request. However, further protection may be required to protect our members from the possible use of genetic information after the death of a patient.

While we can see why means-testing is required, poverty is predictable when an individual is diagnosed with a debilitating disease which leads to death after 20 years. Loss of job, self-knowledge and self-esteem can be a considerable burden for a person to carry with the fact that he or she has an illness which cannot be cured and that perhaps his or her children, brothers and sisters will be affected by the illness also. Should he or she have to endure financial, physical and emotional burnout before receiving assistance? Is it possible to spare him or her the indignity of having to beg for the basics? Is there a way to rectify this? We experience equality in the sense that all our members experience misdiagnosis, misunderstandings and delay.

The Huntington's Disease Association of Ireland, HDAI, would like to see a flexible system providing for real change. It favours an efficient and well resourced system that renders the complaints procedure unnecessary. It would like to see timely interventions based on a clear plan devised and reviewed by relevant experts, including the patient and his or her carer. It was formed in 1983 and has since struggled to highlight the needs of its members. If we had waited until we were in a position to create a perfect association, we would have failed those whom we have helped in the past 21 years. They would not have lived long enough to enjoy the benefits of our work. We owe it to the living to introduce this Bill and all other initiatives to ease the distress caused by Huntington's disease. Can we avoid further delay before it is too late for those now diagnosed?

Ms Bernadette Moran

I wish to draw attention to a few matters, including our handbook for families and friends. Huntington's disease is a relatively rare disorder but one that is incredibly difficult. One cannot overstate or over-dramatise it, a point I checked with Professor Green before we appeared before the committee. We rely heavily on him for good information.

There are probably approximately 400 people in Ireland with the disease. They married and developed the disease in later life. People are perfectly well and then their brain goes, as illustrated in the inside cover of the booklet. Those suffering from the disease suffer the stigma attached to the people Ms Healy referred to in AWARE. They suffer the stigma that goes with mental illness because those with Huntington's disease look drunk and incapable but there is an actual physical disability.

Quite a few members of the association do not turn up at the doctor but at the TD's clinic. It is unusual in that regard. In some respects, we have more to fear from the doctors than from the disease. Quite a few members are worried that if they look drunk and as if they have a mental or behavioural problem, they will end up in a psychiatric hospital and there is nothing in between.

The association is definite that it does not want to see a reference to defensive medicine in the Bill. What happens in the latter stages of the disease is that a person must be spoon-fed. He or she is as bad as anybody with motor neurone disease or similar disease. What happens is that nobody wants to touch him or her. When one goes out to meet a family, one finds that because nobody can be guaranteed he or she can feed a patient safely, he or she does not want to do anything. We find that the service cannot provide a person who can lift the patient and feed him or her properly. Therefore, the person concerned is refused admission and sent home to be looked after by teenage sons and daughters who themselves are at risk to the disease. This is completely wrong.

My fear is that because relatively few suffer from the disease the needs of those suffering from it might be lost in the system. We do not know enough about legislation to know what the wording should be but are very keen to ensure it will be included in the Bill. We were delighted with the reception we received from Deputy Mary Wallace who allowed us to get our point across and facilitated us in getting information. She took our point that up to 9,000 family members were affected by the disease and required support and information. Public health nurses and others contact us because the system does not allow a flexible response to a very difficult disease that is different every day of the week for 15 to 25 years. We are particularly keen to ensure those at risk are not necessarily the carers. We make this point on page 2 of our submission.

A young girl who won a bronze medal with the UK Olympic rowing team this year was interviewed by the BBC as her mother had Huntington's disease. She realises she has the gene for the disease, knows her brain will go after a while and that she will be totally disabled but in the meantime she intends to live her life. Some who are interested in music might be familiar with Woody Guthrie, the American folk singer. He, too, contributed greatly. People are living inspirational lives but are afraid to come forward because they are worried about genetic discrimination. We know of cases where people will not seek care for the patient with the VHI in case the disease is named and they, in turn, will not be able to get help for their children. It is a very difficult and awkward situation to be in. People are hiding the disease which we do not think is right in 2004. We are very keen to ensure they are protected.

At the end I will call a representative or two from each group in order that there will be an interactive discussion between members and the various groups. I now ask Ms Ann Heelan to make a presentation on behalf of the Association for Higher Education Access and Disability, AHEAD. She will be followed by Mr. Cearbhall Ó Meadhra from the Institute for Design and Disability.

Ms Ann Heelan

AHEAD is a small, non-profit making organisation underpinned strongly by research and partnership with stakeholders. We advocate improved access to and participation in third level education for people with disabilities. Ms Shivaun Quinlivan will give the AHEAD presentation.

Ms Shivaun Quinlivan

I am accompanied by Mr. Alexis Donnelly, who, like me, is a board member of AHEAD. The participation rates of students with disabilities at third level in Ireland are still quite low by international standards and that is the body we represent. The numbers are climbing, but fairly slowly, thanks largely to the work of AHEAD and also funding from the HEA.

We in AHEAD believe the Bill is fundamentally flawed. If passed in its present format, Ireland's students and young graduates with disabilities will continue to have to overcome discriminatory barriers, making participation in education more difficult for some but impossible for others without extra assistance and service. Given the publicity and the promises that proceeded the publication of this Bill, and particularly the hype surrounding the publication, the initial optimism has given way to dismay, alarm and anger at this stage with what is or, more to the point, is not in the Bill. We have a number of serious concerns and I will deal with each one in turn.

The Bill is not rights based. It does not focus on the equal right to participate within society of people with disabilities. Instead it focuses on limiting State liability in the context of health and educational services. Everything within the Bill is contingent on funding being available. We recognise there are fiscal restraints but the Bill is overly cautious in this context.

Yesterday we were informed by the Government that there will be money available and funding will become available in the next budget. I suppose our concern is that such funding is not based on this legislation and it will not be available on a sustained basis. We are concerned, not so much with the next two years but with how the Bill will play out over the next 15 years. In this context the Bill is not sufficient.

Section 5 is of serious concern to AHEAD. This section has been described as ring-fencing disability funding, but it does nothing of the sort. It attempts to enshrine in legislation that disability expenditure is down the priority list and this position is further reinforced by subsection (4) which attempts to limit the ability of Ministers concerned to allocate further funds to disability related services when they have made savings in other areas. It is particularly harsh that this should happen in the context of disability sections.

As has already been mentioned, the definition is inappropriate. The definition of disability has been narrowly defined. We have had experience of similar types of definition in both the United Kingdom and the United States. Those definitions and this type of definition serve to exclude more people than they include. We should learn from the experiences of other jurisdictions and we must learn from their failures. This is one of their failures and we should not repeat it.

The definition has so many limiting words that its effect is to ensure the Bill will address only a small proportion of people with disabilities. It does not recognise that many people can benefit from the timely intervention of services, which they require on an intermittent basis only or for a short period.

The definition also uses terms, such as those regarding the provision of services in the State. For students with disabilities who may wish to avail of the Erasmus programme, that is now denied to them because the services would be necessary in other contexts also. This definition should be replaced with the one which currently exists in the Education Act. At least then there would be a consistency in legislation in the context of disability.

The Bill establishes a complicated procedure from application, to assessment and to the receipt of a service statement. Our major concern, however, is that the assessment clearly relates to an accurate statement of what a person needs. That is the only accurate statement because the assessment officer is the only person who need not have regard to resources available. Crucially, however, at that point the assessment report is not the final service statement, nor does it lead into the service statement. At that stage a liaison officer prepares the service statement. The liaison officer must have regard to the assessment report, the eligibility of the applicant for services, approved codes of practices but, most fundamentally, what is practicable and what resources are available. The service statement is therefore a document based on resources available and what is practicable. There is no reference in the Bill to the notion of attempting to ensure that the services mentioned in the assessment report make their way into the service statement. There is no connectivity between the assessment report and the service statement report. The assessment report should form the basis of the service statement and we should be focusing on realising the unrealised in the service statement. AHEAD recommends that greater connectivity be enshrined to avoid the gaps emerging between one and the other.

The complaints procedure is not sufficiently independent. We are talking about health board officials and civil servants. The complaints officer and the appeals officer must have regard to what resources are available. The CEO or head of the education services do not have to comply with these decisions of the complaints officer where they determine they do not have the resources to do so. There is no substantive access to courts. Effectively AHEAD suggests that we link in to an independent effective body which already exists, that is, the Equality Tribunal. That would remove the necessity for some of this bureaucracy that is being created by the Disability Bill. One can remove the mediation officers and the appeals officers instantaneously by feeding it into an independent effective system.

Public service employment is another area of concern. The 3% quota is quite small. There needs to be robust pro-active enforcement of this provision. AHEAD also recommends that the responsibility for enforcement and monitoring should remain with the Department of Justice, Equality and Law Reform and that the 3% quota should be meaningful. Recent research by the Department of Finance clearly demonstrates that the majority of people with a disability recruited in the Civil Service remain at the same grade or do not progress beyond HEO level. If one is to employ 3%, it should be meaningful. The 3% quota should also be extended to semi-State bodies.

AHEAD has other concerns into which we did not go in detail but I want to mention them briefly. We have concerns about the access provisions, which are inadequate. It is imperative that public transport systems are accessible to enable students get to third level colleges. We are aware of one university that provides its own transport system for mobility impaired students because there is no public transport in the area.

In the case of the building regulations, there needs to be proper enforcement of Part M, which goes a long way to assisting accessibility of building and this also is not within the Bill. We also have questions about the appropriateness of including a centre for excellence in universal design within a disability Bill. Universal design is about designing products, environments and communications to be usable by all people. The National Disability Authority is not the appropriate forum for this to be held. It is for everybody and by confining it to disability, one is making a clear statement in that regard.

AHEAD notes that the Disability Bill 2001 was withdrawn because the disability sector was deeply unhappy with its provisions. The then Government agreed to enter into consultations with people with disabilities. These consultations produced a report, Equal Citizens: Proposals for Core Elements of Disability Legislation, by the disability legislative consultative group. AHEAD notes with great regret that the Government has chosen to ignore the vast majority of recommendations produced by that consultation. We must question the Government's commitment to the disability sector in light of this and we call on the Government to safely implement the DLCG document produced after two years' consultation.

Thank you. I now call Cearbhall Ó Meadhra who represents the Institute for Design and Disability.

Cearbhall Ó Meadhra

I thank the committee for inviting me. I am a blind person and one of the people excluded by this Bill. I ask the committee members to note our written submission. I do not intend to read it to them because it would take too long.

I want to explain our approach in the submission and the three conclusions, to which we came and which are of paramount importance and fundamental to the entire Bill. I ask you to watch my time, Chairman, as I often go over it.

Mr. Ó Meadhra has seven minutes in total.

Mr. Ó Meadhra

We also reacted two years ago to the Disabilities Bill 2001 and rejected it. After waiting a long time for its introduction, we initially saw this Bill as a vast improvement and welcomed it but having examined it in detail, we found it more and more depressing. I owe it to the Oireachtas to articulate why we felt it was so negative. There are some provisions which are interesting and will certainly open doors. It is like lifting the corner of the tablecloth. We have highlighted these provisions in our submission.

The definition of disability is fundamentally flawed. The definition chosen is what is called the medical model. It focuses on the loss of function as being the entire social problem. The Bill aspires to address social inclusion but this is impossible with a medical model. The requirement is for a social model, as it is recognised that it is the way society is organised that causes the disability, not the loss of function of the individual.

Let me give a personal example. When I went blind in 1980, I became very upset and depressed. Many will comment that I have not been very quiet in the past 24 years. In spite of losing my eyesight, I did not lose function and the ability to contribute to society. I am now president of the Institute for Design and Disability. I speak on behalf of 60 designers and professionals involved in the field of occupational therapy and people with disabilities who are members of the institute. I have just returned having attended the presentation of the design for all awards in Lucerne, Switzerland.

In what way do I, as a disabled person, fit into this medical model? I do not. Every person with a disability usually finds a way to work around the loss of function but then finds that society does not expect him or her to appear in that way. I had to be assisted by various ushers in coming to this room. If we do not organise our space, the person appears to be disabled but one could say the same if all our houses were designed without a front door because a particular house owner wanted to climb a ladder to get into the bedroom. Nobody else would accept this because he or she wants a front door, yet in many houses the front door is too narrow for people with wheelchairs. Houses with two steps up to the entrance make it difficult for people with arthritic conditions to enter. If one approaches the issue based on a loss of function, one will be caught out because one will never be able to think of all the functions. One must address the way the environment is designed. If the Bill was based on a social model, so many things would change. The social model does not ignore the fact that some have medical conditions and a need for ongoing health focused support. That is accepted. The Bill needs a definition of what level of functional loss will be covered. As we point out, this is encompassed in the Equal Status Act 2000. It works perfectly, has been tested and is usable. It is inclusive of me as a disabled person.

On the centre for excellence in universal design, it is about developing access on the social model for everybody. Ireland is committed to progress on all nine grounds listed in the equality agenda, not just disability. Universal design is aimed at addressing all nine grounds, plus the inclusion of those who do not suffer from discrimination, in other words, all of society. The Institute for Design and Disability follows the principles of design for all, another point of view with the same objective as universal design. I refer to both throughout my submission.

Design for all addresses the process of achieving the design, whereas universal design addresses the outcome of the design. We are interested in changing with what one is left when the design is done by tackling the way people think. Last year we made a breakthrough in that almost all of the local authorities, bar 14, adopted the Barcelona Declaration. They are talking about the principles of design for all, yet the Bill cites the principles of universal design. The Bill should be modified in the sense that universal design should be expanded to incorporate the principles of universal design and design for all.

The centre for excellence cannot be located in a disability organisation. The critical point for the Institute for Design and Disability is that the centre for excellence must be located in an amalgam of design organisations because it is not just about handing over statistics and codes of practice but working with designers on concepts as they see them. It must be empathetic with their processes. We point, therefore, to the model of the Nordic Design Consortium as a centre of excellence rather than a disability organisation such as the NDA.

It is interesting to hear so many viewpoints. I am sure everybody finds this useful. I now call Ms Mary O'Connor, chief executive officer of Children in Hospital Ireland, to make a submission.

Ms Mary O’Connor

Children in Hospital Ireland is an organisation with a brief to represent the views of children and their families who use health services, with particular emphasis on hospital services. One cannot have one without the other. The organisation has provided a briefing pack for each member of the committee which includes all necessary information. I will not dwell on the detail.

What is most striking to the organisation is that there is little acknowledgement of the needs of children in the Bill. Children are mentioned a couple of times but their needs are not encapsulated. That is a basic omission which should be considered and addressed in amendments. Children are not independent agents and their needs must be mediated by parents, families and carers. This has to be taken into consideration when providing services for children with disabilities.

The definition of disability in the Bill does not paint a picture for children or describe their experience of disability. The image that it conjures up is that of an adult. This is the disenfranchising aspect. The definition should be inclusive. It should be obvious that children are to the fore in the Bill. Other speakers alluded to the episodic nature of some disabilities. This is particularly obvious in the case of children. We are concerned that the definition may exclude children with episodic illnesses or conditions.

The provision of care for children is very different from the way care is provided for adults. This must be taken into consideration. This goes back to the point that children are not specifically acknowledged in the Bill. If one is providing services for children, one must take into consideration the fact that the child may not be articulate and may need more time for matters to be described and explained to him or her. More time may also be needed to provide care for him or her as well as in dealing with his or her parents, family and carers in the same context. To provide services for children with disabilities one needs more staff per head of the particular segment of the population with which one is dealing than one would need when dealing with an adult population. If this is not provided for in the Bill, the services being provided for children will not adequately meet their needs.

One must have certain skills in dealing with children. The communication process between children and adults is different from that between adults. People not skilled in this area will not maximise their communication potential. We recommend that a provision be included in the Bill to oblige the training of staff dealing with children, particularly assessors and liaison staff who will be crucial in drawing up plans which will have a considerable impact on the lives of children. This ties in with the assessment and the drawing up of service plans.

Many children with disabilities move between services, from community to hospital services. They also move between educational and medical services. The assessment of needs must specify how they need to be treated, what care plans need to be put in place for them and how they need to be delivered. The assessment must be accessible to all those who will deliver services to children with disabilities in order that people with disabilities, particularly children and their families, will not have the burden of having to re-explain their needs to every service with which they come in contact.

Hospitalisation of children with disabilities can have a considerable impact, both financially and emotionally, on the children concerned and their families. They need extra provision to help them cope with this extra burden. We would like to see the Bill contain measures to remedy this.

Specific codes of practice to be applied in the delivery of services for children must be drawn up. Such codes must be delineated from general codes of practice. The Bill must specifically provide that the sectoral plans drawn up by Departments must take into consideration the needs of children with disabilities and their families.

The other striking feature on reading the Bill was the amount of space given to the appeals and complaints procedure. While not seeking to diminish the need to provide for a robust appeals and complaints procedure, it is striking that the descriptions given in the protection of the delivery of services take up a much smaller space. One wonders whether an analysis of the cost of delivering services adequately would be much more effective than meeting the cost of maintaining on an ongoing basis an appeals and complaints procedure. If services were right, the need for an appeals and complaints procedure and perhaps the need to meet considerable legal bills would diminish.

On the excellence of design, we request that hospitals be considered in the design framework for public buildings which must be taken into consideration. It should provide for children with disabilities.

We would like to see a process of monitoring and evaluation built into the Bill in order that its implementation could be tied into the development of policies and practices to make matters better for children as they move through the various services. Childhood is very short. Therefore, one only has one chance to get it right. The Bill will be crucial in the lives of children. If it does not work at the beginning, they will be missing out on opportunities to develop to their full potential and have the best life possible. It must be carefully considered before being finalised.

I welcome Ms Andy Cochrane, chairperson of Children in Hospital in Ireland.

Ms Andy Cochrane

I am also a paediatric nurse and have a son with a mild disability. This Bill means a great deal to me personally. As Ms O'Connor stated, it is important to get it right for children. I echo what she said.

I thank Ms Cochrane for attending. It is appreciated.

The next group to contribute is the Irish Association for Spina Bifida and Hydrocephalus. Ms Catherine Smyth is chairperson of the Dublin branch. Mr. Nick Killian, chief executive officer, is no stranger to disability Bills.

Mr. Nick Killian

On behalf of the association, I thank the committee for giving us the opportunity to make a presentation. The Irish Association for Spina Bifida and Hydrocephalus was established in 1968 for the care, welfare, interest, treatment, education, advancement and rehabilitation of persons born with spina bifida and hydrocephalus. It seeks to fulfil these aims at national level through its services and activities.

The 1997 document, A Strategy for Equality, published by the Commission on the Status of People with Disabilities states:

People with disabilities do not want to be pitied nor do they want their disabilities to be dismissed as of little importance. All that is required is a little respect and basic needs and rights. Surely this is not too much to ask.

This quotation came to my mind on the morning after publication of the disability strategy when a listener to a radio station phoned in and asked if the Disability Bill would provide for the provision of an occupational therapist and a speech therapist for her son that day and if would it provide for access to a coach for herself and her son to travel to Dublin from Carlow. The answer to all these questions was no. That is why it is so important that Members of the Oireachtas ensure we enact the best Disability Bill possible. Committee members have an opportunity to make a significant difference in the lives of people with disabilities by enacting the Bill as soon as possible without unnecessary political point scoring.

The Irish Association for Spina Bifida and Hydrocephalus wants to highlight certain difficulties we have with the Bill. As other organisations have dealt, in particular, with the assessment of need, we will park that matter because we agree with many of the presentations made to the committee. We want to focus on three areas: housing, transport and employment.

The Irish Association for Spina Bifida and Hydrocephalus is disappointed with the definition of disability used in the Bill. It is too narrow and restrictive. As someone who was involved in the discussions on the Disability Bill 2001, I see it as a different interpretation from that produced by Deputy Mary Wallace.

The Disability Federation of Ireland's document, Housing: the Vital Element, presented to the Joint Committee on Environment and Local Government, states:

The fact that Ireland has a housing crisis is well established. The fact that people with disabilities are caught up within the crisis is scantly appreciated.

The Bill fails to deal with the provision of housing for people with disabilities other than dealing with Part M of the building regulations which, as it stands, does not ensure buildings will be totally accessible when constructed. The Bill fails to ensure the Department of the Environment, Heritage and Local Government will be compelled to consider the housing and accommodation needs of people with disabilities when developing housing policy.

The sectoral plan of the Department of the Environment, Heritage and Local Government uses the word "promote" rather than words such as "compel" or "must". The language used in the Bill, and the interpretation of that language, is extremely important. What does a word such as "promote" really mean? The Bill tinkers with such issues as public spaces, building services, mobility and access, instead of dealing with them in an effective and definite way. For example, the term "public bodies" needs clarification. Does a post office, for instance, come under the term "public body" or "public building"? Will a building used for a Government service but not in ownership of the State be treated as public or private with regard to part M of the building regulations and in the context of accessibility in general? Are credit union offices public buildings? The term "public bodies and public buildings" needs clarification and possible amendment.

While the Bill deals with the 3% quota in the public sector, it fails to introduce provisions to cover the private sector. Generally, the Bill allows the private sector to get off scot free with regard to the provision of any services to those with disabilities. While the State will meet the minimum requirement, the private sector can refuse to take people with a disability into the work force. The only legal recourse for such people is the Equality Authority. There seems to be no interaction between the Bill and the existing equality legislation. Employers in the private sector will continue to ignore their responsibilities to provide employment unless a legal underpinning is put in place. One of the poorest presentations within the sectoral plans is the document provided by the Department of Enterprise, Trade and Employment. It is bereft of any new thinking regarding the mainstreaming of services and employment for people with disabilities. Once again, the word "promote" is used rather than words of positive action.

Significant improvements have been undertaken by Irish Rail, Bus Éireann and Dublin Bus in the provision of accessible transport. The private sector, however, which comprises a growing work force within the transport sector, is again let off the hook regarding the provision of accessible transport. This is not recognised in any meaningful way in the Disability Bill 2004. The failure to underpin transport accessibility through the Bill will only serve to widen an urban and rural divide for people with disabilities. Disabled people living in rural Ireland are seriously disadvantaged when it comes to transport.

On behalf of IASBAH, I thank the Chairman and the committee members for the opportunity to appear before it. At the launch of the national disability strategy, the Tánaiste and Minister for Health and Children, Deputy Harney, stated that the Bill and the strategy represent a "staging post for the future". The Taoiseach is fully committed, as are the Opposition parties. My concern is that if we keep talking and consulting, we will never get this Bill on to the Statute Book. Amendments must be tabled and adopted. There comes a time when the talking has to stop and action follows.

For the sake of all those with disabilities, I urge the committee to bring the Bill to fruition and to begin the long and detailed process of implementation in partnership with the disability community. The three guiding principles of the Commission on the Status of People with Disabilities were equality, maximising partnership and enabling independence and choice. Oireachtas Members have a unique opportunity to ensure that these three principles are enshrined in the legislation. As equal citizens of the State, those with disabilities hope Members will do their duty on their behalf.

I thank Mr. Killian for his presentation. I now call upon Ms Margaret Carroll, national secretary of the Footsteps group, which is part of Down Syndrome Ireland. Has the delegation sent a written submission to the committee?

Ms Margaret Carroll

No. I apologise that our submission has been delayed. It shall be sent to the committee shortly.

I will begin by discussing the title of the Bill, which mentions "disability" but does not recognise the person who suffers disability. This is insulting to those with disabilities. The Bill is complex and detailed and seems to go out of its way to protect the various Ministers, rather than to do the decent thing by providing for those with disabilities. It is flawed, is not rights-based and is constrained by resources. The definition is designed to exclude and the timeframes must be tightened, especially with regard to appeals. The layers of bureaucracy which surround the Bill are frustrating. It would be better that the money allocated for the numerous assessment officers, liaison officers and others employed to administer the Bill were used to provide resources and services for those with disabilities.

One of Down Syndrome Ireland's main concerns relates to the provision of education and training. Many young people with Down's syndrome are now progressing through mainstream schools. When they finish school at 18, 19, or 20 years of age, there is no provision for them. The Bill does nothing to address the educational and training needs of these young people. Various educational institutes should consider devising courses for young people with Down's syndrome. I agree with other speakers that the employment quota is far too low. Whatever the increase in this regard, whether it be to 10%,15% or some other figure, a percentage of that increase should be assigned to those with learning difficulties because the employment of such people is very low.

Throughout the lives of children with Down's syndrome, their parents must battle for their every requirement. Dignity and respect are taken completely from these families and they are subjected to many humiliating experiences. For example, parents of children with Down's syndrome who are in receipt of the domicillary care allowance regularly receive letters which request them to present with their child for a re-assessment of their entitlement to this allowance. The provision of incontinence wear, such as nappies, to young children is often appealed several times. The children, rather than the parents, are written to by various Departments. The Bill does nothing to ensure that the dignity and respect of both children and parents are preserved.

Children who are born with Down's syndrome require a care plan. Some 50% of such children have heart problems, varying from mild to very severe. Children with Down's syndrome have other health needs other than those directly associated with their condition. For example, they are prone to respiratory infections, bowel problems and mobility difficulties. Children with Down's syndrome need a care plan as a right, and the resources must be there to deliver those plans.

These children can achieve a lot and can partake fully in society if they are given the opportunity to do so. The Bill does not address this requirement and it should be amended totally to address the issues I have identified. It is unsatisfactory, fundamentally flawed and extremely insulting.

I thank Ms Carroll for her presentation. I now call upon the delegation from the National Parents and Siblings Alliance, after which we will hear a presentation from representatives of the Irish Wheelchair Association. Mr. Seamus Greene, chairman, and Mr. Kieran Kennedy, committee member, are here to represent the NPSA.

Mr. Seamus Greene

The NPSA supports the statements made by the disability legislative consultative group, NAMHI and the Forum of People with Disabilities. The Constitution states that all people should be treated equally. In recognition of this, the Education for Persons with Disabilities Bill 2003 had its name changed to the Education for Persons with Special Educational Needs Bill 2003. The reason for this change was to emphasise that the purpose of such legislation is to create structures which will satisfy the needs of people with disabilities so that they can live as equal citizens.

However, in Ireland it has not been part of our culture to address the essential needs of people with disabilities and, therefore, the disability community continues to call for legislation to remove this inequality. The Bill 2004 fails to do this. In this submission we concentrate on the major issues in the Bill, although there are many other issues which can only be addressed when essential changes have been made.

The definition of "disability" in the Bill is an example of failing to address the needs of people with disabilities. It is narrow and aimed at excluding a large number of people from receiving an assessment and resulting services. We cannot accept the argument that the definition is narrow to ensure that limited resources are aimed at those in most need. We believe that the fears of those who espouse a narrow definition are misplaced. If the assessment process is properly organised and done by appropriately qualified people, the assessment report will contain a statement of each person's real needs and, by definition, will not contain what they do not need. Thus, resources will be channelled towards the resolution of such needs.

On the issue of a right to an assessment, I will not beat about the bush; the Bill does not give a right to an assessment. The process in the Bill of separating the assessment report and the service statement means that people might never receive certain services stated in their assessment report. There is nothing in the Bill that compels decision makers to refer to the assessment report and eventually ensure that everyone fully receives what he or she requires. The NPSA believes that the assessment report should constitute the active document on the provision of a person's needs. The aim should be for the document to remain open until such time as the needs of the person are satisfied, in other words, that there is a progressive realisation of the person's needs.

I wish to deal with the use of the term "where practicable" in the legislation. One of the important aspects of the rights-based legislation is the pressure it puts on Government to ensure that the people needed to provide necessary services are available and in place. Therefore, for example, if many people require speech therapy and there are no trained people available, the fear of court action will encourage decision makers to train sufficient people to satisfy the expected need. In this Bill not only have people no right to take court action, but neither is any other form of onus put on Government to ensure that the necessary people are in place to provide services. The phrase "where practicable" ensures that the opt out clause will be constantly used. The people concerned will be told, "Sorry, there is no one on the ground to provide this service and, therefore, it is not practicable to give it to you". The same position will apply to resources.

It has become a common cry of the Government that it is providing multi-annual funding and that this will resolve all issues. The NPSA welcomes the promise of a funding package. However, in five years' time the multi-annual funding will cease, but babies with disabilities will continue to be born. All they will have to protect them is legislation, but the Bill will do little in that regard.

The system of service provision and complaints procedures is expensive and cumbersome; members have probably already heard this 20 times. In all cases the officers are bound by the resources and practicability restrictions. It is difficult to envisage many situations where there would be other reasons for not giving a service. Therefore, the system is merely an expensive way of saying "No" in four different ways. Clearly, the end result is that much of the funding for disability will be consumed by a large bureaucracy rather than on much needed services.

Section 19 has not been mentioned much but it is the belief of the NPSA that this section is the Bill's version of section 47 of a Bill on this area introduced by the former Minister of State, Deputy Mary Wallace. Essentially, its effect is to ensure people cannot take any court action except on a point of law, which is already constitutionally available. We believe that restriction should be removed.

With regard to other issues, the main difficulty with the Disability Bill 2004 is that, in the words of the DLCG, it is fundamentally flawed. As long as this is the case, it is difficult to take the detail of it seriously. In short, unless major work is done in the areas referred to above, we will demand that the Bill be withdrawn. However, if the Government manages to resolve these issues to any satisfactory extent, other issues will also need to be addressed. I cannot discuss those in detail at this stage and we believe there is no point in doing so until the substantive issues are corrected.

Unlike the Education for Persons with Special Educational Needs Act, there is a remarkable lack of detail in the Bill. For example, there is no indication as to the composition of the assessment teams. Equally, there is no indication as to what qualifications liaison officers and the various complaints officers will have. However, these and other issues are merely academic at this point.

On my way here this morning, I tried to think of how the Bill might help even one person with an intellectual disability or autism because that is the bottom line. It might help some people to get an assessment but even that is in doubt. The Bill merely means that people will have the right to know what they will not get. It will not increase their chances of getting any service or part of a service. I thought of the award winning "Prime Time" programme on intellectual disability and autism and the family in Limerick with the autistic son who needs a behavioural intervention programme. His father had his thumb broken by the boy on Sunday but could not leave the house because he could not leave his wife alone with the child and his thumb was not attended to for 24 hours. This Bill will not ensure he gets anything, or that anything is given to the man in Tipperary whose daughter is in an institution, locked into a room whenever there is not enough staff to care for her. The Bill will not help her. I also thought of the unit in Galway where until recently approximately 20 residents have no day service. Four of them have now got a day service which is almost a sick joke. They merely sit around all day looking at television. I ask the committee members to think of this. If they were condemned to live in the one place for 24 hours a day for the rest of their lives and the only entertainment they had was television or a CD player, that is fine for the holidays but not good for the rest of one's live. The Bill will not help those people. One might ask who will it help.

I ask Mr. Greene to conclude his presentation.

Mr. Greene

Will even one disabled person be better off because of this Bill? I cannot think of one. The Bill is a fundamentally flawed document. While we are not demanding at this stage that it be withdrawn, we are demanding that it be redrawn to make it a Bill that satisfies the needs of people with disabilities and their families rather than the needs of the Government.

We will now proceed to hear from the representatives of the Irish Wheelchair Association, Ms Joanna Marsden and Mr. Olan McGowan.

Mr. Olan McGowan

Chairman, I sent in a written submission on the Bill but I also prepared a presentation. I can circulate copies of it as it is the presentation I will deliver.

Mr. McGowan

I can do that now or later.

Mr. McGowan has seven minutes to make his presentation.

Mr. McGowan

A word we frequently hear applied to the Ireland of today is "confidence". We hear it in terms of business confidence and consumer confidence and investor confidence. Confidence is not something that was traditionally ascribed to this nation, but in recent decades all that has changed. When Ireland joined the EEC three decades ago who could have imagined that an Irish man would captain the most successful soccer team in the world, that Ireland's economy would be the envy of the developed world, that the biggest rock band in the world would be Irish, that Miss Ireland and Miss World would be one and the same person and that even James Bond would be an Irishman. Who could have imagined that in the negotiation of a constitution to move an expanded 25-nation Europe forward, the leaders of all those nations would look to us to bring it all together, which we did.

None of these achievements happens in a vacuum. It can be reasonably argued that our new found confidence underpinned all these achievement, yet which group in Ireland is presented as the greatest threat to our prosperity that arises from these achievements? Which section of our community will, we are told, effectively, destroy that prosperity if their demands are met? Unbelievably, people with disabilities seem to pose that threat. This confidence in Ireland's ability, this strength and image of Ireland as the mouse that roared suddenly evaporates in the face of a request from those most marginalised. In one of the world's richest states, a Bill is produced which, in effect, presents a way of indemnifying the State against any obligation to bring people with disabilities in from the cold. It creates layers of bureaucracy aimed at telling people what they need, while insulating the State against any obligation to cater for those needs. Resource constraints are littered throughout the Bill and they are expressed in the most overt fashion imaginable. Without fundamental amendments, the structures provided for will institutionalise even further the exclusion of people with disabilities.

In an attached submission the Irish Wheelchair Association will outline precise areas of concern with the Bill which will broadly reflect those of the disability legislation consultation group and other representative groups. Members of the committee are familiar with their broad thrust. They will also be familiar with the linguistic precision of each and every sentence of the Bill and with how carefully each provision is framed so as to provide for very little. I am confident that the people in this room can be credited with a degree of intelligence and education and are familiar with the thinking which prompted this approach which accepts inequality as a natural consequence of human progress, irrespective and independent of any system of social or economic values.

None of us needs lawyers, civil servants or political spin to tell us if the Bill reflects our value system. I ask each member of the committee and the Oireachtas to reflect on this point. Does the Bill really reflect how he or she would like to see citizens with disabilities treated in this day and age? Do we take seriously the words of the President's inauguration speech last week and her reference to the value of community as well as economy, or do we just allow those words to wash over us like the entertainment news?

It is often said politics is the art of the possible and it was politics which rescued this country from where it was two decades ago. However, when it comes to disability, what is it that prompts the body politic to set the bar of what is possible so incredibly low? No one in the disability movement expects everything to be handed to him or her on a plate tomorrow. This is not possible, but were we so incredibly naive as to expect a Bill which might point to a future where a level of equality of opportunity was attainable? The Bill does the opposite. It does not reflect who the people are, rather it reflects the belief Ireland is first an economy and second a society and it protects that economy at all costs. It coldly accepts the pragmatism of inequality. The irony is that most people with disabilities whom I know are desperate to be part of that economy and community. Disability services cost money but why is this permanently reviewed in such negative terms? Why not focus on the return we get from giving people the ability to participate which benefits the country economically, culturally and spiritually?

Members of the Government consistently cite how lengthy the consultation process was and how unique this legislation is but what good is consultation when the voices of those consulted are routinely ignored in legislation which simply places the existing inadequate Government policy on a statutory footing? The Government seems to say, "We will give you what we feel we can when we feel we can and after we have taken care of everything else." There are countries not too far from Ireland which do not need legislation because as a matter of social policy they give their disabled citizens what they need to participate in society.

It is time for politicians and those who framed the Bill to ask themselves some fundamental questions. What level of social exclusion is acceptable in 21st century Ireland? What level of denial of dignity and human rights are we comfortable with in order to insulate ourselves from any perceived threat to our economic status quo? The time has come to find honest answers to these questions, not in the form of ivory tower data from the ESRI or the NESC but in real terms informed by the dignity of our fellow countrymen and countrywomen who happen to have disabilities.

It is up to each Member of the Oireachtas to show where he or she stands on the issue of disability. I beg members of the committee to challenge themselves, their parties, their Oireachtas colleagues and the Government a little more in addressing the concerns of the entire disability sector. All we want is to make our contribution to the country. Giving us the ability to do so would not threaten anyone else's position or prosperity. All we need is for legislators to have a little faith and confidence.

Three other groups will make presentations. We will then have a question and answer session.

Sitting suspended at 11.15 a.m. and resumed at 11.45 a.m.

I welcome Mr. Niall Keane, a board member of the Not for Profit Business Association and chief executive officer of the National Association for Deaf People.

Mr. Niall Keane

The Not for Profit Business Association has nine of the major physical and sensory disability organisations and service providers as members. I can short-circuit my presentation by saying we endorse the attitude and submission from the disability legislation consultation group. I will not go into great detail on the matter.

We have several key concerns about the Disability Bill. Obviously, the definition of disability is one that concerns us, particularly on the sensory disability side involving both deaf and blind people who do not have a medical disability as such. The restriction of the provisions of the Bill to the health and education aspects does not provide great solace for the other aspects of welfare and access to the community. As the needs might be intermittent while the disability is enduring, the definitions of substantial restriction and the need for an enduring requirement for service are limiting and might exclude those who could live independent lives if services were mainstreamed and people were provided with shelter from the Disability Bill.

The restriction of the definition of service to a "public service" is illogical in so far as other services are defined as services available to the public. This will cause major difficulties for people with a physical disability as well as those with sensory disabilities, particularly deaf people. Most of the bodies providing services provide services for the public as opposed to being public bodies providing services. We would like to see this provision amended.

We have major issues with the independent assessment of need. What exactly is a disability? That is the first issue. A person not deemed to be disabled under the Bill will have no source of redress or ability to have an assessment made to prove that he or she has a disability. We would like to see clarity in this matter.

Section 5 is extremely ambiguous in the provision of and the intent to provide resources. We often see in Acts the restriction of "where resources permit". Obviously, a better wording is available to state "Within available resources, the needs of people with disabilities must be taken into account", rather than waiting, like the last carriage on the train, for the day when something extra is available, which will never happen. As resources will always be tight, a better wording should be used to state that within whatever resources are available, the matter of disability will not be the last to be addressed.

The Bill needs to be amended to tie the statement of need with the assessment of need because every escape clause possible appears to be used to restrict the right to a service to circumstances where resources permit, the health boards will not run into debt and so forth. The many get-out clauses must be amended if there is to be a realistic prospect of needs being met or, if the services cannot be provided now, unmet needs being captured and proceeded with.

The complaints system is restrictive and its complexity should be addressed. It should be simpler and more inclusive so that a person can complain about not being considered disabled under the Bill rather than just about not getting a proper assessment. A streamlined appeals procedure would be useful.

There is a need to ring-fence the disability-specific resources. Providers of services for people with disabilities found that we could not do it last year because there was an over-run in the hospital services which restricted the budgets originally put forward for disability. There should be some separation between personal and social services and the health needs of people because many people with disabilities have no health need but require personal and social services to support independence.

People with physical and sensory disabilities need access to a range of publicly provided services rather than just public services. The Bill restricts its scope to health and education, an unusual limitation in a Disability Bill that should cover all aspects of life.

On the positive side, I would like to see this Bill passed. Speaking for the National Association of the Deaf, I would like to see some amendments to strengthen the very weak areas, but there is strong provision in the Bill for deaf people with regard to communication rights, particularly in broadcasting and recognition of the need for Irish sign language. The Bill missed, however, a major opportunity to give formal recognition to Irish sign language, which would have a fundamental effect in many areas of life.

The impact of the Disability Bill on section 14 of the Equal Status Act must be clarified. There should be some cross-referencing between the two that would make for a Bill that can be implemented to the benefit of those whom we serve.

I thank Mr. Keane and I welcome Mr. Enda Egan, the chief executive officer of the Carers' Association.

Mr. Enda Egan

The Carers' Association is slightly different from other organisations here in that we do not deal directly with the person with the disability. Our main concern is the representation of family carers. The recent census figures published in May 2004 showed that there are 150,000 family carers and our own figures indicate that 50% of family carers look after people with a disability. Half of those people look after children with special needs, with the remainder looking after adults with disabilities. Our organisation is an advocate for family carers, lobbying the Government to recognise the role they play in society, to change the carers allowance and to push for the Department of Health and Children and health boards to provide more services for carers.

The Disability Bill will have a huge impact on the lives of family carers. In a percentage of cases, carers are the main advocates on behalf of people who have a severe disability that means they cannot communicate. Having looked at the Bill in detail with a number of focus groups with family carers, and in consultation with the DFI, of which we are a member, we have eleven key points of concern.

Our main concern is that the definition of disability must be amended to include other groups such as those with mental illness, people with episodic illness which is debilitating, people with disabilities without a medical name and children with learning disabilities to ensure early intervention. The definition used is the medical model and far too restrictive. The Bill states that a person has a disability if there is a substantial restriction in his or her capacity to carry on professional business or occupation in the State or to participate in social or cultural life. That statement is where our main concern lies. It is much too tight. From a family carer's point of view, the major issue is that this will leave a large number of family carers outside the loop when the provisions of the Bill is implemented. The majority of carers are under huge amounts of pressure, they are ground down to breaking point. If carers are left outside the loop, which is the case in the Bill at present, it will cause more problems.

An independent assessment of need must be provided as a clear right. There should be a system that allows needs already identified in the assessment that remain unmet to be reviewed with an aim for progression. This would also apply to changes in one's condition and circumstances.

The complaints procedure is far too detailed and complex and therefore needs to simplified and made more accessible. The main complaint with the original disability Bill was that the opportunity did not exist to appeal or complain. In this situation it is extremely complex and while there is a move forward in this respect, it is difficult to assess how much of a move forward it would be in practice. The appeals procedure must be completely independent of the Department of Health and Children.

The Bill should clearly ring-fence finance and resources as disability-specific. There should be a legal duty on all public bodies and Departments to include people with disabilities in their plans for services and access to them. A major issue in the Bill for carers is the need for a move forward in thinking and attitude. If people with disabilities are seen as equal citizens, many of these issues would not need to be discussed in the first instance. This links clearly with the point that State bodies must include people from the outset and change its mind-set so what happens is automatic rather than an afterthought. That provision should be statute based.

There is a lack of clarity on the co-ordination of services across Departments. Housing needs and adaptations for people with disabilities have not been addressed under the sectoral plans for the Department of the Environment, Heritage and Local Government, a major issue for carers who are making applications for house adaptations on behalf of people with disabilities. Every Member of the Oireachtas is aware of the difficulties at local government level as regards that issue, where people are often told they have passed the assessment stage, but unfortunately the funding is not in place.

The tenth point is that services provision based on a needs assessment is contingent on the availability of finance and resources. The family carers with whom we deal believe this should be a rights based Bill. Therefore, services should be available as of right.

On the final point, while the Bill mentions personal advocates for people with disabilities, it gives no recognition to the role of family carers as part of the service delivery chain. There is no mention of carer's needs which have a direct impact on the needs of the person with a disability. From the viewpoint of our organisation, a large amount of work has been done in the past five or six years in seeking recognition for the role played by the carer as part of the service delivery chain. It is as if a complete nervousness is reflected in the Bill, with the carer deliberately not being mentioned. We believe this to be the case, like other organisations which have done much in the past five or six years in seeking recognition for the role of family carers. The word "carer" does not even appear in the Bill. This is sad since carers have come to feel this is a deliberate move to ensure they are not included.

Every Member of the Oireachtas is more than familiar with the issues and difficulties being faced by people with disabilities and family carers. There are many heartbreaking stories of people with disabilities being told by the local council that they have been approved for grant aid under a home adaptation scheme and later being informed that funding is not available. There is even one case of a family carer who cares for her disabled twins being informed that her husband's income puts her marginally above the income threshold for carer's allowance. Therefore, she receives no recognition.

Family carers, while recognising this is a disability Bill, feel they have been given no recognition, despite the massive contribution they make to the care of people with severe disabilities, in particular. Because of the restrictive definition of disability laid down in the Bill, the legislation excludes many family carers and people with disabilities, for example, family carers who care for young children with learning disabilities. Ironically, even though there is a failure to recognise the role of family carers, if the legislation is unsuccessful, it is they who will have to cope with the fallout. That is an extremely important point which should carry a great amount of weight. If the Bill is unsuccessful, who will pick up the pieces? The only ones who can do this are family carers.

We are scheduled to hear from another group later. We will take its written submission fully into account. I apologise for any inconvenience caused because of time restraints. I intend to ask three Members of the Oireachtas to make comments and ask questions of three or four groups. We will then hear from three or four more Members of the Oireachtas. Groups should leave it to me to referee proceedings. Initially we will hear from Deputies Peter Power, Stanton and Lynch who will be followed by Deputies Finian McGrath, Hoctor and Ó Snodaigh.

I thank the Chairman for facilitating me and apologise in advance for not being able to remain for the entire question and answer session. I thank all the delegations for their presentations, the vast majority of which I found extremely interesting. While I would like to ask questions of everybody——

Will each Member of the Oireachtas, please, confine himself or herself to a contribution lasting less than three minutes?

I will restrict myself to asking one question of three people.

I found Ms O'Connor's presentation interesting, especially on the episodic nature of children's conditions. She made the case that they may be excluded under the definition of disability. While nobody wants any child to be excluded in the delivery of services, I wonder whether it would be more appropriate to deal with such children in the context of the health services.

I also found Mr. Ó Meadhra's presentation interesting. He can correct me if I am wrong, but I believe he said he might be excluded under the definition of disability. I was interested to hear this because the definition includes a clear reference to substantial restrictions in sensory impairment. I would have thought this would include someone in Mr. Ó Meadhra's position. I would like to hear how he arrived at such a conclusion.

I found Mr. Greene's presentation disappointing and lacking in credibility. He claimed in clear language, as he did on radio this morning, that "in five years' time, the multi-annual funding will stop, but babies with disabilities will continue to be born." It beggars belief to suggest funding in this area will stop after five years. Such an assertion amounts to scaremongering when one considers last night's statement by the Minister for Finance, Deputy Cowen, that there would be increases in multi-annual funding. I do not understand how Mr. Greene can make such a statement.

Mr. Greene made a clear-cut statement that the draft legislation did not make provision for a right to assessment. How has he arrived at this conclusion? Representatives should be asked to clarify any erroneous statements they make before the committee. Section 5 is clear-cut in its statement that "an assessment under this section shall be carried out without regard to cost or the capacity to provide any service identified in the statement as being appropriate to meet the needs of the applicant concerned". Mr. Greene's comments represent a complete misinterpretation of the wording of that section. They undermine his presentation and harm the credibility of his organisation.

I shall allow Mr. Greene to reply to Deputy Power's comments later.

I welcome the delegations and thank them for the time and effort they have expended in preparing their presentations. We are approaching the Bill with an open mind. We welcome its publication as it gives us something with which to work.

The ring-fencing of resources has been mentioned but I do not see evidence of this in the Bill. My colleague, Deputy Power, referred to section 5 which seems to imply that health boards will have to look after all other matters first and that the remaining funds will be allocated to this area. There will be no problem if the remaining funds are sufficient to meet requirements. Is this the delegations' understanding of the section?

A change in the title of the Bill has been the subject of some discussion. I would like to hear more about this because it is the title which defines a Bill. As the title is rather blunt, a change may succeed in changing its tone. I made a similar suggestion with regard to the Education for Persons with Special Educational Needs Bill 2003 and its entire tone changed after the change of title.

Service providers and voluntary bodies are hardly mentioned in the Bill. Has this issue been considered by delegates, Mr. Keane in particular, in terms of its impact on the organisations providing services for people with disabilities which often function as facilitator between the State and the person receiving a service?

Professor Green might comment on the issue of health insurance in the context of the various organisations providing such cover. He might also address the issue of genetics. I have said it should not be mentioned in the Bill but covered under separate legislation. It requires a unique focus and should not be incorporated into the Bill as an add-on. Perhaps this is a moot point.

The role of general practitioners is not dealt with in the Bill. Perhaps the committee should have a discussion about this issue with doctors' representatives. Doctors are often the ones on the front line in dealing with the difficulties of people with disabilities.

I compliment the delegation from the Carers' Association on its impressive presentation. Do the delegates from the various organisations believe the Bill is amendable? Most have stated it should be amended. There have been strong suggestions that such an amendment should be substantial. Is it possible to effect such a change in the Bill? Ms Quinlivan might comment on this issue.

Like most delegates, Ms Quinlivan mentioned the need to change the definition. Can she clarify her reference to the education legislation?

Ms Quinlivan

I referred to the Education Act 1998.

The definition contained in that Act was amended in the Education for Persons with Special Educational Needs Bill 2003. Ms Quinlivan might clarify whether she is referring to the original or amended definition. As she is probably aware, there is a difference between the two.

The sectoral plans have been criticised and one must wonder whether they go far enough. The committee may require more information. As the Comhairle Bill comes under the aegis of another committee, I cannot comment in that regard.

I welcome the delegations. It is helpful to hear opinions from the various groups which deal with people with disabilities. Those of us not involved in the caring sector or affected by disability may find it difficult to rattle off the names of the different organisations. I was particularly struck by the presentation made by the Huntington's Disease Association of Ireland which represents those suffering from a disease not often taken into consideration. Does Professor Green believe genetic testing will become more common with regard to other disabilities and diseases? In many respects, this issue is fundamental to how the Bill will play out.

I recognise there is huge frustration on the part of each organisation in its anxiety to ensure its story is told. Each delegation is anxious to be heard, whether it represents service providers, not-for-profit organisations or those with a particular disability. It is essential that the Bill should be satisfactory when enacted. Is it correct that this frustration is the consequence of a perception that the organisations were not listened to during the two years of consultations? I also detect a weariness at the prospect of having to make one's case all over again.

It is extremely difficult to secure housing and accommodation for people with disabilities. An element within local government is beginning to suggest that, for instance, all housing for people with disabilities should be provided on a voluntary basis, in a manner similar to the operations of the voluntary housing associations. Is this effectively a form of ghettoisation? Should such housing be inter-mixed with that provided for the rest of society?

I will ask Ms O'Connor to offer the first reply to members' questions. I will then ask Mr. Greene, Ms Quinlivan and Professor Green for their comments.

Will the Chairman also ask Mr. Ó Meadhra to respond?

I shall ask him for his comments later.

Ms O’Connor

Children in Hospital Ireland is concerned with the provision of health services. I recognise that children with disabilities have multiple needs which can be dealt with under the aegis of a number of Departments and services. However, our concern is to ensure adequate provision of health services for children and that there is an understanding of what is required to give children, their families and carers the services they need.

A question was asked about the episodic nature of disabilities, on which I am not an expert. Our organisation focuses on the global picture. However, there is no doubt that a large number of children who go into hospital or make use of health services have disabilities, some of an episodic nature. It is a question of ensuring the service matches the level need at a particular time. Therefore, health services must be included in the equation.

Mr. Greene

I have a 29 year old daughter with an intellectual disability. For 29 years I have had three roles — I have been a carer, a fundraiser and a campaigner. I remember the days when I campaigned on behalf of PAM. Although members of the committee may not, there are others here who will remember this group. As a result of its campaigning, the provision made in several budgets was quite good. However, the money allocated to this area soon diminished. We also campaigned for the Cowen plan but three years after it had been put in place it was a case of "bang, the money was gone". Elderly people were out in the snow campaigning.

A disability Bill should assign only two roles to the carers of people with disabilities — the role of carer and that of fundraiser. Unfortunately, however, I do not envisage the position changing. I would like a Bill to be enacted that would bring to an end the need for campaigning and that would put me permanently out of a job. We are aware from the PAM campaign and the Cowen plan that as soon as an multi-annual funding programme comes to an end, there will be no more funding. I require from this legislation something that will move Government to continue catering for people with disabilities when such multi-annual funding programmes cease.

I ask members of the committee to convince me that there is a right to an assessment under the Bill. I have a major difficulty with section 5, on which I have consulted. The interpretation I have been given by many others who would have more expert knowledge is that people with a disability will be catered for when every other group has been catered for. Section 5 takes precedence. I put this case to the Minister of State, Deputy Fahey, and one of the drafters of the Bill at a DLCG meeting and they both agreed that under the Bill, as drafted, there was no right to an assessment.

We will agree to differ.

I ask Ms Quinlivan to address the question of whether the Bill is amendable.

Ms Quinlivan

I said to somebody during the break that one could not make a silk purse out of a sow's ear. The difficulty is that the Bill needs to be fundamentally changed. It has to be rewritten to take on board what has emerged following two years of consultation at the instigation of the Government. The DLCG document is the basis on which we should move forward. It contains the findings of the consultation process. Otherwise, we must ask ourselves what is the purpose in consulting people with disabilities if their views will be ignored.

I wish to address two other points. In regard to what Mr. Greene said about section 5, as a lawyer, I am of the view that it does not ring-fence or guarantee disability funding. Having checked with three senior counsel and a judge, I am absolutely certain about what the section means. It is the most inaccessible in any legislation I have read. When the funds run out, we will be left with what is provided for in legislation. We will have to rely on what is contained in the legislation in terms of what the position will be ten, 15 or 20 years down the road. Therefore, it is the sections included in the legislation that are important rather than the promise of funding for the next five years.

The definition of disability to which I referred was the original definition in the Education Act 1998. It is also the definition included in the Equal Status Act 2000.

A number of questions relating to genetics were raised. I call Professor Green to reply to them.

Professor Green

Two points were raised, the first of which was raised by Deputy Stanton who asked about the impact of genetic testing on health insurance. I presume he was referring to private health insurance. The country that has the greatest level of private health insurance is the United States of America. Most American states have introduced legislation banning the use of genetic testing for health insurance. That is the model I imagine will follow. Private health insurers in Ireland are not asking for genetic test results. They are community rated, although this may not always stand. There is a time lag in declaring pre-existing conditions. I believe health insurance is covered in the legislation which I expect includes all forms of insurance. I want to see it continue in that vein. I hope that answers Deputy Stanton's question.

Deputy Lynch asked if genetic testing would become more common. The answer is yes. Our centre was set up ten years ago at which stage we did about 500 to 1,000 tests per year. We now do about 8,000 or 9,000 tests per year. It will impact on many disabilities, not just rare conditions such as Huntington's disease which is a genetic disorder. Learning disabilities, childhood deafness and visual loss all have a genetic basis, as has spina bifida, for all of which there will be genetic tests. This will be of great help to those suffering from these conditions. If people have concerns about undertaking such tests which are in their own interests because of the impact on insurance and that they will not be protected, they may choose not to have a test. There is a concern that there may be an uninsurable genetic underclass defined by modern science. This is something I would not encourage.

A specific question was addressed to Mr. Ó Meadhra on whether he was excluded under the definition of disability contained in the Bill.

Mr. Ó Meadhra

It falls on me to defend the nation on this question. I was surprised that I did fit into the definition. The key aspect — I am relying on memory; members of the committee may have to help me with the wording — is that it refers to a person being able to perform professionally and in society and there being a severe restriction——

A Deputy

A substantial restriction.

Mr. Ó Meadhra

——of one's capacity to do so which requires continual need for services. Although I am blind, I do not use any services in living my life. I do not fit into the definition in respect of which I am superficial, yet everywhere I go in society, including this building, I am instructed. I gave various examples in my presentation.

I commend and thank all the groups for attending and making their submissions. On a broader issue, it is important that people with disabilities, the groups working with them and their family members are heard as they set down markers for us as legislators. All of the groups have major concerns about the legislation. As Mr. McGowan said, what good is consultation if their voices will be ignored? This presents a particular challenge to us as Members of the Oireachtas.

I speak as the parent of a daughter with Down's syndrome. I agree totally with the submission made by Ms Carroll from Down Syndrome Ireland in which she expressed concern about the number of bureaucratic services covered in the legislation. She stated there was insufficient emphasis on front-line services. Do the other groups agree with this?

We need to end the humiliating experiences of many people with disabilities. I speak as someone who had to kick and scream to get services for my daughter ten or 11 years ago. Things have improved but we have not yet travelled to the end of the road. This Bill has the potential to do so.

Deputy, you should ask questions.

It is important that these comments are made. Do the groups agree that the Disability Bill must give equality and dignity and be rights based?

Ms Shivaun Quinlivan referred to the 3% employment quota. She says many groups think this base is too low. Is she aware that Dublin City Council, for example, employs more than 4% staff with disabilities? Many other companies have achieved similar levels. Is she aware that this is happening? These companies did not need legislation to introduce good practice or to treat people with respect.

Mr. Cearbhall Ó Meadhra said the Bill was depressing but was opening doors. How wide open is the door? Is it 30%, 40% or 60% open? Mr. Nick Killian raised the issue of employment. He referred to the use of words such as "promote" as opposed to "positive action". Would Mr. Killian prefer the phrase "positive action" to the word "promote" in the legislation? Does Ms Mary O'Connor of Children in Hospital feel the Bill safeguards the rights of children? Do any of the groups present believe the Bill is quality legislation? During the past three weeks I have not heard a complimentary comment on the Bill.

I also welcome everyone here. No one has claimed this is perfect legislation. If it were we would not be here. Listening to the valuable submissions by the witnesses gives us legislators an opportunity to look at what needs to be amended. We have heard very positive suggestions as to what should be left out of the Bill and what should be included. One of this morning's earlier presentations pointed out that reference to subtitling for those with sensory disabilities has not been included in the Bill. There are other omissions.

Ms Healy from AWARE pointed out that it has been predicted that by 2010 mental illness will be more prevalent in Ireland than heart disease. What is the source of that statistic?

The question of the definition of disability arose today, as it did at last week's meeting. Mr. Ó Meadhra, in particular, referred to it as did a number of other people. I ask those who have raised this issue to present us, as early as possible, with the wording they would recommend. The Carers' Association has pointed out that reference to carers is omitted from the Bill. The committee needs to consider the issue of definitions and to see if an amendment can be made.

Ms Margaret Carroll referred to the bureaucracy of the assessment process involving an assessment officer, liaison officer and so on. The consultative group that worked with Government on this matter sought this process to ensure progressive development and provision of services.

In his presentation, Mr. Seamus Greene referred to a child or young adult with autism. I fail to see how one could claim that the needs of such a young person or his or her family could not be addressed under the Bill. Can Mr. Greene support this statement? I do not understand it.

The question of the definition of disability is the main one that has arisen. Other members have already raised my other queries.

I thank the groups for their informative presentations. It is a pity this session could not be longer.

A number of groups referred to the question of definition. Ms Margaret Carroll of Footsteps said the definition in the Bill was designed to exclude. Other groups mentioned other definitions. The representative of Ahead referred to the definition included in the Education Act 1998 and Mr. Olan McGowan of the Irish Wheelchair Association referred to the definition in the Equal Status Act 2000. Do the groups have a preference? Why are we still dealing with various definitions at this stage? Another definition is given in "Equal Citizens", the document that makes proposals for disability legislation. I know there is a preference for any definition other than that contained in the Bill.

Many people have difficulties with the limits of the sectoral plan. Mr. Olan McGowan expressed the view that the plan should involve all Departments. Neither in today's hearing nor in earlier hearings has there been a mention of the inclusion of other public bodies. The Freedom of Information Acts and the Official Languages Act apply to all public bodies and organisations in receipt of Government money. Should this Bill have an equally broad application? Do we need a broad statement of statutory duty as already exists in the section 75 social welfare legislation in Northern Ireland? The broad principle of that legislation covers all public bodies. Would that be a way of getting around the problem?

I will ask Mr. Olan McGowan, Mr. Nick Killian, Ms Sylvia Meehan and Ms Bernadette Moran, in that order, to respond.

Mr. McGowan

Some Deputies have asked where the organisations stand on the question of the Bill's reflection of the "Equal Citizens" document. I do not know where to start in answering those questions. I wish Deputy Power were here because he seems to be the most defensive of the Bill. May I put it this way? Even when the Americans were planning to go to war in Iraq they found some Iraqis to stand beside them. It could be argued that those people were self serving and appointed by the Americans, but they were Iraqis. If the Bill deserves the support of the disability sector, I challenge the Government to find one disability group to say so. If the Bill reflects the "Equal Citizens" document I ask the Government to find one group to say it does so. I do not believe it does. I cannot see where the voices of people with disabilities have been truly listened to.

My reading of section 5 is that it takes precedence over everything else in the Bill. If money runs out, under section 5 one is not entitled to anything. I defer to the legal expertise of Ms Shivaun Quinlivan, but that is my reading of the section. Section 5(2) contains the longest and most convoluted sentence I have ever seen. The sentence consists of approximately 220 words and is an extraordinarily long way of telling people they will get nothing if the Exchequer runs out of money.

In my submission I referred to the fact that the Department of Arts, Sport and Tourism has not been included in the sectoral plan. This is merely one example. It is as if to say people with disabilities have no particular interest in sport, culture or tourism. This is an issue on which I campaign constantly. IWA sports is a huge event. We hosted the Special Olympics, yet the Department of Arts, Sports and Tourism is left out of the sectoral plans. I cannot understand why they are not targeted across the board.

Mr. Killian

The word "promote" runs through all the sectoral plans. The word "promote" can mean many things to many different people but, ultimately, we need a Department to say "we must". The words "must" or "shall" have to come into it and must be used more broadly. The way some of the sectoral plans have been put together is a disgrace. I refer again to the one about employment. It was a case of putting a few words on a page. If one looks at the document there is more blankness on the pages than there are words. From that perspective they need to be reviewed.

Deputy Lynch raised the question of what is happening with regard to housing for people with disabilities. Part V of the Planning and Development Act 2001 is making a difference but it is creating a certain ghettoisation. However, many voluntary organisations are taking part in it. The other issue is that many people with disabilities are not putting themselves on the housing list, which is a difficulty at that level.

There is a difficulty with regard to the definition. As the Chairman said at the outset, I was involved in the last Bill presented by the then Minister of State, Deputy Mary Wallace. There was not much argument about the definition then. There might have been some but not to the extent there is on this occasion. I would go back to the definition in that Bill or deal with the Equal Status Act, which has a good definition. I do not see why there should be two definitions of disability.

Ms Meehan

There was a question about what we meant by the assistance that should be provided for people who are deaf or have a hearing impairment in order to understand and enjoy broadcast programmes. They felt there was not any suggested improvement. We wish to see a recognition of the problems of blind or partially sighted persons by the inclusion of the term "audio description" in the Bill because it has not been. There is a reference to hearing helps but the audio description that would be available with digital TV services includes being able to speak to people who have some sight impairment to tell them what is going on. While they can hear all right they would need that assistance and we think it should be mentioned. It is heartless, if not sometimes cruel to say there should be some assistance but not to suggest anything. I am afraid that if it is not mentioned it will not be looked after.

We were also concerned about the provision of personal advocates and that the pool from which they are drawn should be expanded. We mentioned that there are many people with experience who would be suitable for this role of advocate, which would include a lot of older people. The thinking behind that is that we have nine grounds for anti-discrimination, which should be adverted to when people are being chosen for any panel like that. It operates on the same principle to which people earlier objected. However, they have now accepted that, say, an interview panel must include people from various sections of society. Similarly, this advocacy service should include people who can relate, based on their own experience and wisdom, apart from their work experience and qualifications.

Finally, we were quite concerned about the question of the appeals system. The Comhairle (Amendment) Bill proposed that in the event of a qualified person disagreeing with the decision of the director, who is employed by Comhairle, as regards their application for advocacy services, this can be appealed to the chief executive of Comhairle. We think that is a contradiction and is unfair to Comhairle in so far as it takes away some of its independence and clearly is not seen to be an equitable manner of deciding this. We firmly believe that the appeals system should be extended.

Ms Moran

Deputies Finian McGrath and Hoctor referred to the wording. I personally would find it difficult to go back to our families and say that they have decided to start again because people will ask me how I define the word "they" in this context. They just do not want to know that there will be further delays in getting any kind of service. I would be in favour of some kind of re-drawing of what is already there because I am worried about the time that will elapse. I have been involved in the association for over 20 years and I meet people in their own homes. Some of those homes have been hit by serious poverty because a parent has lost a job, so that was inevitable.

I am now dealing with the next generation, which is a strange position to be in. A significant number of the younger generation will no longer entertain or engage with the system because they were so badly hit by it in their parents' time. We cannot underestimate the damage that is done by that type of interpretation. A large number of people will not deal with the health insurance aspect. They do not want it known that they have Huntingdon's disease because that might reflect on their children, who might not be able to obtain cover for anything. That is a perception rather than a reality but it is there. We are not in a position to contradict them and say there is a better service now, or that they are any better protected than before. We are worried that because it is a rare condition it does not get the attention it deserves. I am delighted that Professor Andrew Green was here to explain that genetics will cause problems further down the road.

I thank Deputy Lynch for her comments about the association. The frustration its members feel is enormous and there is no sense that it has ever been addressed. I would rather go back to the families and say I am confident that everybody supports the Disability Bill and the notion that we are better off than we ever were in the past, and that we are in a stronger position than ever to treat people very well. How we define that and how we make it happen does not bother me to the same extent, although as an organisation we represent all kinds of people from all walks of life. We have politicians, doctors, nurses and various other people who have found out in the last couple of years that they have a genetic disposition whereby they could develop Huntingdon's disease. I can ask them, as members of a focus group, what they make of this wording or if they could provide a better one. While I can produce such a wording, I cannot provide the committee with names or addresses at present because they are hiding out in these good jobs all over the country and they are not protected by Irish legislation. I am keen to see it happen in some form because otherwise we could go on endlessly. We have a relatively good draft into which much thought has been put. We have an obligation to make it, fix it and sort it for the people who will not live long enough for us to talk about it for another seven years.

Thank you, Ms Moran. I now call on Deputy Murphy, the Vice-Chairman, followed by Senators Glynn and Cummins.

I want to deal briefly with the 3% requirement on public bodies to employ people with disabilities. I am confident there will be a general agreement that this figure should be increased but the problem — this might be an example of what is going to happen throughout the Bill — is that Opposition amendments that have financial implications will be disallowed by the Ceann Comhairle. The viability of the Bill will be under the total control of the Government parties because the Opposition parties cannot table any worthwhile amendments to the Bill as they would necessitate some financial implications. In those circumstances, such amendments will not even reach the floor of the House.

One or two speakers mentioned the 3% issue. Whether we are talking about 3% or 5%, we need to deal with the broader issue of people who are being employed under that requirement as it currently stands. The milder physical disabilities people have the better, as far as the public bodies are concerned. People with learning disabilities, and particularly sensory disabilities, find it difficult to be included in this 3% requirement, or whatever percentage we are going to have. We will have to include a firm provision in the legislation to ensure that the more disadvantaged people should have a certain priority when it comes to getting jobs in public bodies.

Should an employed person with a disability, who is getting support both from the health board and FÁS, have a right to receive direct funding so they can decide the best way to support themselves at home and at work, rather than FÁS supplying a facilitator to the employer and the health boards providing carers?

I agree with the concerns about depression expressed by Ms Julie Healy. Very few families have not been touched by the icy fingers of suicide at some time. Does Ms Healy agree general practitioners might take a more proactive approach in this regard? While I am not saying they do not, such a view exists rightly or wrongly. Normally depression is treated by the discipline of psychiatry. Would it be helpful to make general practitioners more aware of the condition, as they form the first line of treatment?

Ms Loughney said the Bill had the opportunity to become a landmark. While we all might agree to a greater or lesser extent that the Bill has deficiencies, does she agree it is a major step in the right direction? Further to what Deputy Murphy said, if amendments have merit, it has been the practice in all Governments to accept them.

Ms Moran is correct in pointing out that I worked in the profession at one time and I had under my care a patient who suffered from Huntington's disease. As those suffering from that disease have very challenging behaviour, they often end up in psychiatric hospitals, which is an entirely inappropriate setting for them. Where would Ms Moran suggest they should be treated? Should they be treated in an Alzheimer's unit or a similar unit of that nature? Does the disease merit a special unit somewhere in the country to address the problem?

Mr. Killian is absolutely right. We have become blind to what a public building means. Since the abolition of the ultra vires rule as it pertains to local authorities, does he agree local authorities should now become more proactive and where access is not provided, they should, on an agency basis, provide that access and charge the offending entity in the appropriate way. I believe they should do so.

Mr. Keane touched on a number of matters that deserve to be highlighted. The complaints system is restricted as was also mentioned by Ms Quinlivan. Does Mr. Keane agree that linking into the equality tribunal would be a means of short-circuiting that malady?

Having only recently been appointed as a member of the committee, this is my first meeting. I found this morning's presentations very informative. Concerns exist regarding title and definition. We would welcome suggestions as to how these can be made inclusive. Some have suggested the definitions in the Equal Status Act and the previous Bill were better in this regard. It would be helpful for the committee to get some consensus on the matter. While the Part N building regulations were laudable when introduced, they are not being enforced properly and I would welcome suggestions as to what we should do in that regard. Less emphasis seems to be placed on the private sector as opposed to the public sector. Should this matter also be addressed in the Bill?

I call Ms Heelan, Mr. Egan, Mr. Keane, Ms Blake and, to wind up on behalf of the group, Ms Healy, to whom a number of questions were addressed.

Ms Heelan

A question was asked about 3% of employees being people with disabilities and the fact that organisations like Dublin City Council has achieved 4%. Some 2,600 students in higher education have disabilities, with approximately 500 emerging highly qualified and with great ability every year. They are meeting attitudinal and other huge barriers in accessing employment. While I am delighted Dublin City Council has achieved 4%, we consider 3% as the lowest level and it should be higher. With a population of 10% the Government should be employing a higher percentage of people with disabilities, which would provide leadership to the community and private sector. At the least the Government should do it.

Difficulties have been outlined in the Civil Service report as to how those currently employed in the Civil Service are employed, not the least of which is the definition of disability. It is based on self-declaration and often for example people with diabetes discover they have been included without knowing it. The definition is an issue.

Another issue in the Civil Service report is that people with disabilities are at the lower rungs of the Civil Service and are not progressing at the same rate as others without disabilities. People with disabilities have not progressed beyond HEO level. There is inequity in how people are employed and in career progression. Departments such as the Department of Defence and the Garda are excluded. I am sure some jobs in those Departments could be done by people other than the Arnold Schwarzeneggers. There is much different employment——

We are discussing the Disability Bill and have drifted slightly.

Why do people with disabilities remain at lower grades within the Civil Service?

Ms Heelan

The report stated they did not get the same opportunity for career progression. In some cases they were not given the information that opportunities were available to them. For example, a visually impaired person did not see the advertisement on the wall, which was not provided in an alternative format. It is down to lack of information and attitudinal issues.

Mr. Egan

I shall expand on the matters raised. According to the census, we have approximately 150,000 family carers. Of those approximately 70,000 deal with people with disabilities. The average population of a county is approximately 152,000. We have a group equal to that average. If national legislation were prepared that excluded one county we would have a problem. However, that is the number of people we are now discussing. Further to the point made by Deputy Hoctor, our organisation certainly believes, from the point of view of recognition, at a minimum the term "family care" would need to be inserted into the Bill. While the reason is certainly not clear, it is a major anomaly in terms of the recognition carers seek.

Mr. Keane

A specific question was asked on the complaints procedure. The first thing people seek in a complaints procedure is accessibility. Any of the organisations in the Not for Profit Business Association and the DFI would state the complaints procedure is written almost to ensure it is not possible to reach the end of the process. It is like a labyrinth and needs to be tightened up. The other side of making complaints is getting redress. While along with all others, our organisation would not like to see resources put in the hands of lawyers, we should have a mechanism for some kind of "fix-it ticket", whereby when somebody has not been able to vindicate his or her right to a particular service or access to it, that issue should be fixed within a specific time period. This is like the American system for fixing automobiles. Rather than getting a fine on the spot, motorists are given time to fix it and make redress so it does not become a matter of compensation.

The complaints procedure, as outlined in the Bill, shows the orientation of the whole Bill. People do not describe or define themselves as having a disability to seek advantage. They do so to try to redress the disadvantage society and lack of services places on them. Deputy Stanton asked what service providers would think. We do not give access to our services to give advantage to people with disabilities but to redress the disadvantages. This Bill does not seek to restore equality but to ration it throughout life. Its wording is mean-spirited and restrictive where it should be expansive and inclusive. It ensures definitions are not included that will allow a person to access the services required but instead rations those services and prevents equality.

From a service provider's point of view, I do not want to be told at some time in the future by one of the guardians of the public purse, either the health boards or the new health services executive, that they have no obligation to provide a service. Non-profit organisations could be construed as public services under the Bill and, as chief executive of one of those organisations, I am under no obligation to provide a service. I would hate that to be given as the reason for not giving the resources. There must be a major rewording of the Bill and a change in its focus.

Ms Blake

It is difficult to find the 3% of vacancies in employment. Could a register for them be established? FÁS acts as a training agency and an employment agency for the State. I have a deaf daughter who is aphasic and we have encountered difficulties finding her good employment. She has a high IQ but her aphasia interferes with her capacity to communicate, although when she is speaking to someone one to one, she will find out everything about him or her very quickly. She is currently doing the ECDL but FÁS does not provide any back up for her when she finds a job. It should stay around for a few weeks to see how the person is getting on. In County Kildare a person suffering depression was ready to go back to work. He was placed in something gentle with someone alongside him for a day or two to ensure it was not beyond his capacity and who told him to ring if there was any problem. That is a marvellous system and FÁS could do this with the people it sends for jobs. It has sent my daughter out a few times for receptionist positions. She is deaf. That is hard to comprehend.

She is having great difficulty establishing her right to an interpreter. She once went for a job packing bags in a supermarket and insisted on her right to an interpreter. I am sure that is why she did not get the job, although she did get one in another supermarket. I am now in a battle with the centre where she does her ECDL and FÁS. FÁS says the centre's funds include provision for an interpreter and the centre says they do not. I shall mow them down myself but I should not have to. She is digging in and demanding her interpreter, who is a lovely person and whom she can ring any time but that is not the point, she should be able to have her there all the time.

If a school wants to employ a new teacher, it must take a teacher from a particular panel in the area. There is no way to decide one of those teachers is not suitable due to gender. There should be scope for panels of suitable people who are available for employment in this area and a database of areas where employment is available. In this day and age that is not beyond the realms of possibility.

Do all the groups agree that there should be a set, standard definition of disability for legislation as it arises?

Ms Quinlivan

There is a set, standard definition in the Employment Equality Act, the Equal Status Act and the Education Act 1998 that should go across all legislation.

Senator Glynn raised the tragedy of suicide, mentioning GPs but the story of suicide begins before any visits to a GP. According to a study by the late Dr. Michael Kelleher from Cork, only 18% of suicides had sought any form of professional help in the two years prior to ending their lives. We must recognise depression as a fatal illness. GPs are excellent for treating depression and they refer on when required but we all need to know about depression and its symptoms. We mentioned heart disease — we all know now about chest pains, pain in the arm and what to do about them but people often offer inappropriate advice to sufferers of depression because we do not acknowledge it as potentially fatal.

Deputy Hoctor mentioned that mental illness is more widespread than heart disease, as the European Commission pointed out this year. Mr. Séamus Greene and Ms Bernadette Moran mentioned waiting for 20 years and there are others who have been waiting longer, spending time fund raising when they should have been doing other things. These people are waiting for equality, dignity and rights-based legislation for themselves and their carers. It would be unjust to constrain or dilute that because funds are unavailable.

The meeting is now drawing to a close. If anyone would like to say anything more, it should be put in writing and sent to the committee. That will be distributed to all committee members for consideration before the end of the Second Stage debate. The transcript of today's discussion will appear on the Oireachtas website within approximately a week and if anyone wishes to review his or her contribution and suggest minor amendments, he or she should not hesitate to do so. I thank all the witnesses for appearing. It has been beneficial to us and I am sure the office of the Minister has taken on board what was said. I hope that together we can put in place a Disability Bill which, though imperfect, is at least acceptable to everyone.

The joint committee went into private session at 1.10 p.m. and adjourned at 1.15 p.m. sine die.