Disability Bill 2004: Second Stage (Resumed).

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

Mr. McCormack

The stop-start manner in which Second Stage of this Bill is being debated leaves much to be desired. It is being taken piecemeal, which is akin to treating the matter with contempt. I hope this is not a deliberate attempt by the Government to dilute the issue and further frustrate the campaign for a proper rights-based Bill. Why did the Government get it so wrong? It was obliged to withdraw the 2001 Bill and it then introduced this Bill. Why did it not listen to the valid case put forward by the support groups for people with disabilities? That puzzles me greatly. Moreover, the manner in which the debate on this Bill is being conducted is most unsatisfactory. In reality, the Government is treating the Bill and people with disabilities with contempt.

We had a Bill in 2001 before the general election. That Bill was withdrawn because it was so inadequate. The Government then promised in the run up to the general election that a rights-based Bill would be introduced. It took three years to come up with this Bill which falls very short of what is required. The legislation was brought before the House on 4 November 2004. I spoke on it on 22 February 2005 and the debate was interrupted in the middle of my speech. Now the debate has resumed.

It is difficult to make sense of this type of debate. The way this Bill has been handled is farcical. We were promised a rights-based Disability Bill and more money for the disability sector. However, we now receive an excuse of a Disability Bill which has dashed the hopes of people with disabilities. Their hopes were raised only to be dashed by this Bill. The parents of children with disabilities are at their wits' end as a result of the lack of necessary services for their children. This Bill is every bit as inadequate as the previous Bill, which was withdrawn. Does the Government believe it can slip this new Bill through without much fuss because there will be no general election this year?

I and other Deputies have been lobbied extensively about this Bill. I received a letter from a group of parents in Galway whose children have autism and severe learning difficulties. The children are aged between ten and 11 and receive a respite service at Crannóg in the John Paul Centre in Ballybane. Unfortunately, this service will cease when the children reach the age of 12. In anticipation of this, their parents submitted a plan for respite and residential services to the Brothers of Charity in Tuam in 2002 and have been following up the matter since then. They are being further frustrated in their efforts.

I wish to quote a section from a letter sent by the Brothers of Charity to this group of parents on 25 February 2005:

The level of funding being provided by the Government and the Health Service Executive locally has not allowed in the last few years, and indeed will not in the years ahead allow for the provision of the additional services required. As a service, we are very concerned at the lack of funding available and continue to press locally and the Government about the needs of this group and other groups within our service.

This passage plainly spells out to the Government that services like those provided by the Brothers of Charity can be provided so long as the necessary funding is available. This responsibility lies with the Minister and the Government. It is perfectly acceptable for Opposition Deputies to be lobbied but the responsibility ultimately lies with the Government.

The same lack of funding and services applies in the case of older people with disabilities. When a person with a disability reaches the age of 18, he or she is excluded from the education system. Parents are concerned about what will happen to their children when they die or are unable to care for them.

This Bill falls far short of the rights-based legislation that was promised to people with disabilities. It fails to incorporate many of the core principles and recommendations of Equal Citizens, a report published by the disability liaison consultation group in February 2003. This report represents the collective and agreed vision of the disability sector on disability legislation. Given this level of activity, I am very disappointed by the current Bill.

The legislation requires major reconsideration and amendment if it is to vindicate the rights of people with disabilities. The Bill's definition of disability is too narrow and inconsistent with other legislation like the Equal Status Act 2000. The definition of disability in that legislation is much more inclusive. The definition in the Disability Bill would exclude many people with disabilities, for example, people with epilepsy, who require services. Under the legislation, people with epilepsy would no longer be considered disabled and would lose their entitlement to services they currently qualify for such as disability allowance, occupational therapy and supported employment. The Bill does not confer a right to the independent assessment of need and does not adequately address an individual's right to have his or her unmet needs addressed over time, as identified in the independent assessment report.

The appeals system set out in the Bill is excessively complex and cumbersome. Not only would the appeals procedure be difficult and frustrating to navigate, it would also create a great deal of expensive and unnecessary bureaucracy, resulting in resources being diverted from the provision of services. The appeals system should be independent of the Department of Health and Children and the Bill does not stipulate that Departments and public bodies must include people with disabilities in their plans and services with appropriate monitoring and accountability.

There are ten key issues in this Bill from the perspective of the members of the DLCG. The first is the definition of disability, which is too narrow. The use of such terms as "substantial restriction" and "enduring" and the exclusion of certain conditions and early intervention needs is a matter of concern. The Bill should provide a clear right to an independent assessment of need and for an individual's right to progressivity in their unmet needs identified in their independent assessment report. This should be done annually or whenever there is a change in a person's circumstances. The conveyance system is too complex and needs to be simplified. The appeals system should be independent of the Department of Health and Children and should be sited in another Department. The Bill should provide for a clear ring-fencing of disability specific resources. The Bill must provide for a clear statutory duty on the part of all Departments and public bodies to include people with disabilities in their plans and services with appropriate monitoring and accountability. The definition of public services in the Bill should encompass all public services provided in the public system by statutory or non-statutory bodies. The sectoral plan section of the Bill needs to take the wider needs of people with disabilities into account. For example, the Department of the Environment, Heritage and Local Government has not addressed the housing needs of people with disabilities. The impact of the Disability Bill on section 14 of the Equal Status Act needs to be clarified. There should be a review of disability legislation at least within a set period of years. I think the DLCG mentioned a period of seven to ten years.

The Government will not get away with this Disability Bill because the electorate will not let it forget the cruel and shameful neglect it has shown in its dealings with the disadvantaged. A grave responsibility rests on the Independent Deputies in this House who normally support the Government and Government backbenchers. I heard a number of Government backbenchers during the debate five weeks ago. I heard Deputy Cassidy outline all the faults of the Bill and state at the end of his speech that he would support the Bill on Second Stage. A grave responsibility rests on those members of the House who genuinely believe that this Bill does not address the needs of people with disabilities.

There are many anomalies in the Bill and so much could have been done to improve the lives of people with disabilities and their families. A particular hobby horse of mine which I have raised on several occasions in the House is a mother caring for a disabled family member who receives the carer's allowance, which is welcome recognition of the year-round work that she does. An anomaly arises if the woman's husband and chief breadwinner dies. She will qualify for the widow's pension and lose her carer's allowance the next week despite continuing to be a full-time carer 365 days of the year. That is cruel. I have asked the previous four Ministers to deal with this issue but I am still being ignored. I will continue to raise it for as long as the people send me back here to do so on their behalf.

The medical assessment of people on domiciliary care allowance must happen every year. Why is that necessary? It is a source of great frustration for the parents and the persons involved. The person's situation will not improve if he or she is assessed. It is a cause of resentment for all concerned and is a waste of time and resources of the Health Service Executive which carries out the assessments. When will this legislation be examined or updated? We have been slow in abandoning the 2001 Bill and introducing this Bill, which will be inevitably passed by the Government.

I wish to raise the issue of the disabled person's grant, which concerns public representatives at all levels. This is a farce because of the limited resources that have been made available to it. For example, I have encountered many cases in County Galway and Galway city in which people with disabilities who are unable to climb stairs due to advancing years or other reasons apply for a downstairs bedroom and bathroom. However, as there is so much red tape, delay and lack of funding for this essential service, the people involved have sometimes passed away before the work is completed. Several people have witnessed these instances and I submitted a parliamentary question on the subject recently.

The Bill addresses the health and education needs of people with disabilities, but they have many other needs, such as housing, transport, employment etc. For example, many people with epilepsy cannot drive due to uncontrolled seizures but are not entitled to a free travel pass unless they are in receipt of disability allowance. If they are capable of working but not driving, they must use public transport, which can be extremely expensive. Why should they not have a free bus pass? In the area of education, people often underperform by as much as two years in comparison to their peers despite having average ability. Most children are not psychologically or educationally assessed even if they experience significant difficulties. Access must be made available to assessment to evaluate the impact on learning, memory etc. Where seizures disrupt school attendance, supplementary hours such as are provided for some disabled children in home tuition should be considered at another school and not as an alternative.

There are many other aspects of this Bill. I ask the Minister of State why he did not consult the representatives of people with disabilities. Why was the Government so careless, why did it think so little of this? It was aware of the campaign undertaken to have the 2001 Bill withdrawn. Why did it not listen on this occasion to the articulate case put forth by the representatives? It seems that the Government is completely ignoring this case and is only going through the motions of putting this Bill through after raising the hopes of those people with what was promised before the election by the former Minister of State, Deputy Mary Wallace, who was banished to the back benches for her troubles. She promised the people a rights-based Bill but the Government had neither the guts nor the intention to deliver on it.

Mr. Sherlock

I ask the Minister of State to note that I am not speaking for myself, as I have had much consultation with various bodies. So many people are doing such great work that he must take it into consideration.

I refer to Gorey Centre for Independent Living Limited. Its members stated that, though the Taoiseach said that the Disability Bill 2004 would be the best disability legislation in Europe a number of weeks before it was published on 21 September, it is a load of rubbish. Think of this statement coming from those who work with people with disabilities. They said that, for some time, people with disabilities have been calling for a rights-based Bill but instead were given one that was resource-based. One of the only rights in this Bill is what they claim is the "right to know what you already know". It brings disabled persons no closer to the services they need and want. Currently, if resources are not available, one can be refused a service even if it is needed. The same situation will occur with this Bill.

This is not right. If their appraisal is correct, it is a waste of time to pass this legislation as it will change nothing for them. Accordingly, the centre's members state that under this Bill the requirement that public buildings be accessible to people with disabilities will not come into effect until 2015. Think about that. The Bill seems to be based on the medical mode of disability rather than the social needs of disability.

The assessment of the needs of people with disabilities will be conducted by individuals in the Health Service Executive, as was stated previously. Any appeal will be conducted by individuals from the HSE. In essence, it will appeal its own decision. This is not an independent assessment of needs. The assessment should be conducted by a neutral body outside the Department of Health and Children and the HSE, such as FÁS, and given to the HSE as a statement of needs. If it is appealed, the appeal should be undertaken by an independent organisation. That must be done to give a proper assessment of the needs. The Office of the Director of Equality Investigations is the HSE's main source for these services. The matter should be referred to the Health Service Executive but as it is centered in Dublin, it is out of touch with local needs. I shudder to think of the service that will be provided in the future.

The Cork Centre for Independent Living Limited wrote to me about the national disability strategy and to express its deep concern about the disability legislation as currently proposed. It stated:

We welcome the recent Government announcement of an €894 million multiannual funding package, which will go some way in addressing the historic underfunding of services and supports for people with disabilities. This is an unprecedented and welcome development by Government. While this funding is an important and significant development it is only part of the solution. We believe that, if people with disabilities are to become truly equal citizens in Ireland, this can only be achieved through legislation that ensures, promotes and enforces their status as equal citizens.

In Ireland, people with disabilities have the same rights as everybody else. What we need is to be able to exercise those rights. If the Bill is adapted to provide for specialist services and secure the inclusion of people with disabilities in public policies and services it will vindicate in legislation these rights. People with disabilities will have become equal citizens in Irish society.

That is what this is and what the Bill should be all about. These questions should not have to be raised.

The organisation went on to state:

In our opinion, the Disability Bill, as it stands, falls well short of the commitments given by this Government. In 1997 our current Taoiseach and Tánaiste made a commitment, in the Programme for Government, ‘to ensuring that disability is placed where it belongs, on the agenda of every Government Department and public body'. They further stated that: ‘our policy is based on the core principles of promoting empowerment through appropriate, accessible and responsive services'.

That does not appear to be happening in this Bill.

The organisation further stated:

We welcome these statements and commitments, however they have not been incorporated into the legislation as currently proposed. [We have the evidence of that before us.] The Bill, as produced, fails to meet the expectations of stated Government policy in two key areas, firstly, the way in which it addresses the specialist service needs of people with disabilities, and secondly, the manner in which it addresses the responsibility on public service policy, planning and delivery to include people with disabilities as equal members of the public. Ensuring that people with disabilities have the specialist support services they need is half the job done. Society must be able to fully include them.

Surely, that is what this Bill is all about, but it falls very much short of that.

The organisation also stated: "Therefore the Bill requires major reconsideration and amendment if it is to vindicate the rights of people with disabilities and to bring the needs of those members of the public who have disabilities into the centre of public policy and service delivery." I quote this letter so the Minister of State will note the points made and make the necessary amendments to this legislation. The Cork Centre for Independent Living looks forward to hearing from the Minister of State and I will also reply to those people. I have had consultations with groups previously.

I come to my own area of north Cork. The Minister of State might have heard of Annes Grove in the Castletownroche area which is a great centre of excellence. I wish to quote from a letter from Patrick Annesley, the person in charge of that section of disability. It has done much with Clúid to provide accommodation in certain areas of north Cork. An accommodation unit will be provided at St. Patrick's in Fermoy shortly and there is one in Mallow. The letter states:

Things are less good elsewhere, however, and so I am also writing to ask for your help in addressing the national deficit, by way of an amendment to the Disability Bill currently before the Oireachtas. The Disability Legislation Consultation Group has identified ten fundamental flaws in the Bill as it stands, and I am listing and enclosing these on a separate sheet. While we would welcome your support on any or all of these issues, I am asking you personally to address two specific points. [The previous speaker referred to the points stated by Mr. Annesley in this regard.]

1. Access to housing and the provision of appropriate levels of supported accommodation are of paramount importance in combating and mitigating mental ill-health, as in other areas of disability. At present there is no coherent policy for meeting accommodation needs, and the Bill fails to address this deficiency.

The Bill should impose a duty on the Department of Health and Children, in conjunction with the Health Service Executive, to assess and quantify present and future accommodation needs. The Bill should also impose on the Department of the Environment a duty to work with the Department of Health and Children, Local Government and other appropriate statutory and non-statutory agencies to provide the accommodation to meet those needs.

Unless this is done now, it is likely that accommodation needs will in many areas continue to be met, at best, haphazardly and often not at all.

I am therefore asking you to seek to amend the Bill.

I am using this opportunity to ask the Minister of State to note what has been said and to amend the Bill.

The letter goes on to state:

2. For many people, mental health difficulties are long-term or recurrent but acute illness is intermittent or episodic. The level of disability experienced in such episodes may be extreme and even life-threatening.

It is unjust that episodic disability is at risk of being excluded from the provisions of the Bill. It would be intolerable if a person could access services under the Bill only if he/she had already received a diagnosis of chronic disability. In any individual case, even if a clinician comes to believe that such a diagnosis could be justified, he may equally believe that, in the patient's best interest, such a diagnosis should not be given at that time, if ever.

Therefore, I am asking you to seek to have the Bill amended.

Great work is being done by people in every parish. These people have made the effort to put in writing their observations, contentions and objections to much of the Bill. The Disability Bill has been awaited for many years. I hope the Minister of State will take these points into consideration. The great, voluntary effort by people must be recognised by this Government. I look forward to Committee and Report Stages of the Bill and hope amendments will be made by the Government to make it easy to implement. That is what people with disabilities need. I will back any case made in support of people with disabilities.

Mr. P. Breen

I wish to share my time with Deputy Hayes. I appreciate the opportunity to speak on this important Bill which I am sure is being watched closely by all concerned citizens as an indictor of how well the State intends to treat the most vulnerable and those most in need in society. There are 360,000 people with disabilities in this country with many thousands more caring and supporting them every day. Despite this statistic, this group often finds it difficult to have its voice heard by policymakers. I want to help put that right. These thousands of people have struggled to have their voices heard for many years. The House will recall the campaign for disability legislation by the Forum for People with Disabilities began as far back as 1990. Some 12 years later, the Government made a failed attempt to address the need with the 2002 Disability Bill. It was a Bill written in haste and without due consideration for those most affected.

The Government's latest attempt to remedy a situation it should have remedied years ago is before the House. Given that the Government has had 14 years to address concerns and has gone through the failed experience of the 2002 Bill, one would have thought that this Bill would have done the job. Unfortunately, it does not. Comprehensive and adequate legislation to address the needs of the disabled community and incorporating the excellently articulated requirements of their representative groups should include some essential elements such as a right to an independent assessment and services, an independent appeals and complaints procedure, meaningful targets in regard to employment and access to buildings and a wide definition of disability which would include those with mental health problems.

Since 1992, the Government has commissioned and paid for three consultative groups to make recommendations. Their output was the basis for a good disability Bill. However, the Government has ignored the results. While it employs the language in the reports of these groups, it does not employ the substance. The substance of the recommendations of three excellent consultative groups has been ignored.

The Bill does not contain the essential elements I have outlined. It is inadequate and forces disabled people into a bureaucratic nightmare. It forces people to search and scrape for essential services. When individuals like Séamus Green of the National Parents and Siblings Alliance say things such as "We are reasonable people" and "We don't expect miracles", it makes me wonder what world the Government lives in or wants us to live in. Carers, parents and siblings deserve reasonable treatment. Given the work they do day in, day out, they deserve miracles. Disabled people deserve better from the Government and deserve better legislation.

These people should certainly have a right to an independent assessment and, crucially, to services. They should have an independent appeals and complaints procedure. They deserve meaningful targets in regard to employment and access to buildings. There should be a wider definition of disability that would include those with mental health problems.

As legal experts on the subject have argued, there is a fundamental difference between the attitude to equality within European law and that adopted by the Government. The approach taken by the European Union is to enforce equality by means of a legal right not to be discriminated against, harassed or victimised and a right to reasonable accommodation. Should an employer or service provider not comply with the right to equality, the employee or service receiver may seek redress in the courts. The Bill does not deliver these rights to our disabled people. It is not as if the Government did not have the time to get this right. It had plenty of time.

The disability legislation consultative group met the Minister of State at the Department of Justice, Equality and Law Reform, Deputy Fahey, last year to express its concerns. It also met the Taoiseach and had hoped for a positive response to the reasonable amendments. That group, which represents 597 organisations, said there were fundamental flaws in the Bill, yet the same legislation is before the House.

As with much of Government policy in recent years, the Bill appears to ignore the realities, for example, in my constituency of Clare, with which the Minister of State at the Department of Enterprise, Trade and Employment, Deputy Killeen, is aware. The personal assistant service is vital for people with disabilities. This issue highlights a flaw in the Bill. There are 30 people in Clare who have been assessed for the personal assistant service and are on a waiting list two years later. The Bill will not help those 30 people or their families or any other family in a similar situation.

The Bill may guarantee the right to an assessment, but without rights to services, it is fundamentally flawed. Disabled persons cannot take up work with large employers such as the Army, the Garda or the Naval Service. The 3% employment targets points also to another flaw in the Bill. The definition of disability used to assess how this target is being met is less strict than the general definition in the Bill. Therefore, when the Government is being tested, a condition such as asthma can be considered a disability, but in the general context of the Bill, the disability must be persistent and ongoing. This excludes those in the early stages of conditions, for example, those with multiple sclerosis. It also excludes those with conditions that can seriously disable them. The Government wants it both ways; strict definition in terms of rights and looser definition in terms of assessing whether the 3% employment target has been met.

We had the shocking 50% cutback in the annual budget in the Mid-Western Health Board area for the special respite home purchased for the Brothers of Charity in Ennis. Some of the children need 2:1 staffing levels. The home was unable to provide respite care for the children who need it most. The inadequacies of the system and what it provides for people with disabilities and their carers are obvious and disgraceful. People are at the end of their tether. The position has deteriorated to such a degree that one of my constituents, who is in a wheelchair, resorted to telling the Minister that if it were physically possible, he would chain himself to the railings of Dáil Éireann and stay there until disabled people got the recognition they deserve.

In 1999, a ten-point plan drawn up by groups representing people with disabilities was published in Ennis. The plan, drawn up by the Centre for Independent Living in conjunction with the information age town project, the Central Remedial Clinic and the Disabled People of Clare, called on the Government to bring forward changes for people with disabilities to achieve full social, civil and political rights. Those are needs and realities for the 360,000 disabled people in Ireland, those in Clare, and their carers, families and siblings. This is what was expected from the legislation. The assessment of the legislation is best carried out by those who will be most affected by it and they have handed down their assessment.

Some time ago, 700 disabled people, their families and carers packed the RDS and Leinster House at a public meeting. They highlighted ten serious flaws and described it as forcing disabled people into a bureaucratic nightmare. Let us take, for example, a disabled person who wishes to make a complaint about service provision. The Bill places four layers of bureaucracy between them and resolution of their complaint and the process can take up to 18 months. This is after years on a waiting list. When it comes to access to buildings, they face more bureaucracy. The Bill places the burden of proving inaccessibility on the disabled person. Any reasonable person can see that placing sole responsibility on the person in this case is wholly unsatisfactory and shameful.

Even if the Minister did not like what he was hearing from the representative groups of persons with disabilities when they made their assessment, the Government should have heeded the views of the Human Rights Commission. The State should set itself to be judged by the highest standards of international law given our economic status and the citizens' desire to see fair treatment for the vulnerable in society. Instead, the President of the Human Rights Commission, Dr. Maurice Manning, said the legislation was defective based on analysis of international law.

Those most affected by the Bill call it flawed while those charged with monitoring rights call it defective. In its current state, the Bill is an insult to disabled persons, their families and carers and is more evidence, if we needed it, of the Government's detachment from the realities of people's lives.

Mr. Hayes

I am pleased to have the opportunity to contribute to the debate. The last Disability Bill was withdrawn because every organisation representing disabled persons opposed it. There was a public outcry that the Government, one of the richest in the world, was failing to give disabled people their entitlements. In examining the record of what has happened in recent years, it is clear that many voluntary organisations became involved in helping the disabled. Were it not for those voluntary organisations, the religious and others, where would the disabled be in society?

I refer to the work of the Tipperary association for the mentally handicapped. It has undertaken fund-raising efforts and set up throughout the county schools and help centres such as the Moore Haven Centre. This is mirrored in every other constituency. When discussing this Bill we should not be afraid to applaud those people while also taking on board the many issues for which they have lobbied. The disability legislative consultative group has issued a list of ten requests which in its view are not addressed in this Bill. This is a matter for concern and the House should take cognisance of the views of these people.

Those who work in the disability sector must be commended. There is nothing as frustrating as working a system that could and should be improved. I refer to the situation in Australia which provides home support to people with disabilities. I have spoken to a person who worked in Australia and now works in the disability sector in this country. We have much to learn from their system.

The needs of young people with disabilities in schools and the lack of funding by the Department of Education and Science should be of concern to each of us. There is no Member of the Oireachtas who has not been lobbied by individuals and families on behalf of those with disabilities. They come from every part of the country and they are trying to help young people with disabilities.

On the subject of the disabled person's grant, money was expended and wasted on electronic voting. The waiting list for assessment for the grant is at 180 in my constituency. This is deplorable when so much money is available and is being wasted.

Having consulted widely, the Government was true to its word. A long and detailed process of assessing various voluntary organisations and groups took place. Discussions and negotiations were held with Government officials in the hope that their members would receive the recognition and resources required to live a life where equality, independence and choice was as natural for people with disabilities as it is for each of us. Then came the long wait for the publication of the new Bill. This Bill had to be better; the Government had finally recognised that the people, by their nature, wanted to do the right thing for people with disabilities. Having taken such a long time, it was hoped the consultative process had produced a Bill that was better. On publication of the new Bill, it soon became apparent that the consultative process had not led anywhere. Those who had concerns about the delaying tactic were certainly proved right. Had the local and European elections anything to do with that?

The Government chose to ignore the majority of the recommendations made by the various organisations. It is arguable that this Bill is more restrictive than the previous one, although couched in better language. In the final analysis its main objective is to indemnify the State against any obligation to treat people with disabilities equally. Everything is contingent on a certain amount of resources being made available. The public supports the efforts to make more resources available to those with disabilities.

Assessment will establish the need of every disabled person, but without a direct or binding line to the service statement, all it may do is raise expectations only to find that the resources are not to be made available. This would be very disappointing. A long drawn-out process has been undertaken to assess needs. This Bill should be made more amenable. The views of those who have worked in a voluntary capacity should be heeded because if not, this Bill will go nowhere. It is not the responsibility of the Department of the Environment, Heritage and Local Government to provide for the building of houses for those with disabilities. This should be addressed in the Bill. I appeal to the Government to take on board the views of the bodies and organisations who have made representations. Action is needed now to provide a better quality of life for people with disabilities.

Mr. Howlin

I am privileged to have the opportunity to make a few observations on this important legislation. God knows it is a long time coming but it will have an impact in a substantial and measurable way on the lives of tens of thousands of citizens. It will impact on their carers, families and loved ones and on their quality of life. This cannot be said of much of the legislation that goes through this House. It behoves us to deal with this as the important legislation it is.

I come with the perspective of a former Minister for Health who saw, even in my time, the area of disability coming out of the shadows. I listened to the radio today to the celebrations of the origins of St. Michael's House which happened because somebody put an advertisement in the newspaper for people connected to anyone with a mental disability to come together to see what could be done to support and help them. The prevailing view in this society and probably in every other society for a very long time is that people with disabilities or people who were less abled or differently abled were a cause for charity. In recent times we have moved beyond that and what is now at stake is the demand for full vindication of the rights of citizens, not tokenisms, sops or charity but a real understanding that differently abled people have a right to full citizenship and all that involves.

Campaigning groups have changed the public perspective on disability in recent years. There is more inclusiveness in the approach to education. Now schools do not think of excluding people because they are physically challenged or have an intellectual disability but rather see how that can be overcome to enrich the school environment in total by inclusion, not exclusion and compartmentalisation. Disabled people and differently abled people are involved in the full gamut of public life as is right and proper. This change in perspective has impacted on planners although there are still too many side-door solutions to access. In general, people expect those who are unsighted or have sight or mobility difficulties to be able to access public buildings and conduct their business. We have not reached those goals but there is an expectation that this should be the case. Nobody argues it should be otherwise.

The most impactive event in recent years to engage and capture the public imagination was the Special Olympics. Each of us is disabled in some way. Those games copperfastened the notion that everyone, regardless of ability, has a right to full participation and, moreover, has great gifts that can bring significant enrichment to society. When I became Minister in the Department of Health and Children there was no accurate measure of the degree of intellectual disability. Groups campaigning for services and supports at that time found there was not even an accurate measure of the volume of need. We proceeded to set up the first register to measure the volume and degree of need accurately. Only when such information is available can one begin to put in place a structured response.

We have come a long way since then. We do not have broad strokes of need where whatever was available, whether day care or full-time residential care, had to be applied for by all because it might be the only care option. There is an understanding in modern times that what is required is the measurement of the specific needs of individuals and the responsibility and obligation of the State to respond to that analysis on a case-by-case basis.

What has been the political response to this development of public opinion in its recognition of the exclusion of some of our citizens from full participation in citizenship? The programme for Government promised legislation based on a commitment to rights:

We will complete consultations on the Disability Bill and will bring the amended Bill through the Oireachtas and include provisions for rights of assessment, appeals, provision and enforcement.

This is the promise the Government freely entered into and made publicly. There is an expectation that what is written into the programme for Government should be delivered.

Instead, there has been a shoddy welshing on this publicly and freely made commitment by the parties in Government. The broad-ranging consultations that were promised were delivered through a process which conveniently dragged on without exposing the Government's real intent until last summer's local and European elections were over. This meant there could be no public judgment on the delivery of the Government's promises. The Government has made a mess of this situation once. After being forced to withdraw the legislation, one would imagine it would get it right on the second attempt.

Consultations did not involve a two-way system whereby views were taken on board. The National Disability Authority chaired the group set up by the disability advocacy movement to set out the views of that movement on this critical legislation. The disability advocacy groups made extensive representations to the Government, published detailed documents and set out their expectations of rights-based legislation that would provide assessment, provision and enforcement as of right. It is ironic that during this extended period of consultation which ran to two years, the Government was full of praise for the inputs of these groups. On several occasions in this House, the Taoiseach lauded the work of the advocacy groups and did not quibble to any degree with their expectations and proposals. The publication of the Bill represented a sham and a shameful disregard for the broad-ranging consultations and the contributions all those advocacy groups brought to the discussion table.

As part of the consultation process, the disability movement itself changed because it came to accept that rights could not just be laid out with the expectation that they would be delivered the next day. There was an understanding in this dialogue that there would have to be timeframes because all the necessary therapists, support staff and residential and day care facilities could not be provided immediately. All these developments required careful planning over an agreed timeframe and a resource allocation. The advocacy groups brought that understanding to the discussions. There was no short-changing of the Government with an expectation that was unreal. There was an understanding that, in a partnership way, historic change could be brought about and that supports to vindicate people's rights could be introduced over time in a structured, feasible and affordable manner.

The disability movement had the courage to state this in its documents and to put it to its members, including families in urgent need of support, so it could dampen expectations that change could be achieved overnight or that there was any magic-wand solution to providing adequate resources and supports. Advocacy groups would have supported this Bill if it had outlined a set of rights in principle and set out a structure and process to achieve those rights on a planned, focused and individual basis. That would have been reasonable, affordable and morally right. It would also have been the correct approach in terms of keeping faith with the words of the Taoiseach and the promises contained in the programme for Government.

Unfortunately, the Government's response was a Bill that meets nobody's needs except that of the Government itself to pretend to be doing something on this issue. Even the Bill's definition of disability is unclear and too narrow. What is lacking is a principle that should be at the core of the Bill. The required principle is that services should be provided to allow the vindication of full citizenship as a right.

Debate adjourned.

Dáil Éireann debate - Tuesday, 12 Apr 2005