Seán Ryan (Dublin North, Labour)

I am pleased to have the opportunity to contribute to this debate. As far back as 1997, the Taoiseach and Tánaiste gave a specific commitment in the programme for Government to ensure that disability was placed where it belongs on the agenda of every Department and public body. This is the basis upon which the Government parties contested the general election of that year. The Disability Bill 2001, which was launched just before Christmas 2001, was fundamentally flawed and eventually withdrawn in February 2002. The Minister of State with responsibility for the Bill at that time, Deputy Mary Wallace, was made a sacrificial lamb for the incompetence of the Government on this issue. This scapegoating was reflected when the Ministers and Ministers of State were announced following the general election of 2002.

It is important that we have an opportunity to outline not only our own views on the Disability Bill 2004 but the views of those who deal with disability on a daily basis, including the parents of disabled children, carers and so on. I make no apologies for my intention to detail elements of submissions made by some of these interests in the context of this debate. The first is a letter I received from a number of constituents directly involved in dealing with disabled persons. The letter states:

At its very core, the Disability Bill should improve the lives of people with disabilities and/or their families and ensure their basic human rights are finally guaranteed and protected by Irish legislation. Like every Irish citizen, people with disabilities need, and are entitled to, quality services. That means a clear, unequivocal right to an independent assessment of need with a legal entitlement to services identified by their assessment and an agreed plan to secure these services within a reasonable timeframe if they are not immediately available. They also need a genuine and simple complaints procedure, independent in every way, to allow redress when essential services are being unfairly denied. All Departments and public service providers must also be held accountable for including people with disabilities in their planning, supporting equal access to services and facilities and meaningful progress and targets in relation to issues such as employment and education.

The Disability Bill 2004 is presented to us as positive action to support participation by people with disabilities in everyday life. However, as it stands, this Bill has serious shortcomings and will not improve lives but will force people with disabilities in constituencies throughout the length and breadth of this country into a bureaucratic nightmare in the search for essential services. Never again will legislators have such an ideal opportunity to get this historic Bill right.

The authors go on to ask for our support to prevent the wasting of time and money on "inadequate and flawed systems". That is a fundamental assessment of what we in this House are trying to achieve.

In the context of the withdrawal of the previous Bill, specific commitments were given that there would be ongoing consultation and that the views of those dealing with the issue on a daily basis would be taken into consideration. Brainwave, the Irish Epilepsy Association, made a submission on the Disability Bill to the Joint Committee on Justice, Equality, Defence and Women's Rights. A constituent of mine writes in a letter to me that there is very little care for persons with epilepsy. He says:

Getting over seizures is a very difficult time but even still there is no help available. It is common knowledge that GPs and accident and emergency departments are not interested if a person has come out of a seizure even though this may mean a week with poor health to recover.

There will be no improvement in the situation of those with epilepsy if this Bill is enacted as initiated. These people require help and the Minister of State should take that on board in his considerations of the legislation.

All public representatives, whether in the Government or Opposition parties, have received numerous representations which attempt to highlight the shortcomings in the Bill. It was agreed at a well-attended meeting as part of the national disability strategy in the RDS on 8 February that, as it stands, the Bill will do nothing to improve the lives of people with disabilities or their families, it will not meet the widespread demand for basic rights and it will force people with disabilities into a bureaucratic nightmare in the search for essential services.

The meeting resolved that, at a minimum, the Bill must be amended to include a clear and unequivocal right to an independent assessment of need for every person with a disability and that this assessment must be translated in law into a statement of entitlement to service together with an agreed plan to secure access to these services within a reasonable timeframe if they are not immediately available. Furthermore, the Bill must also provide for a genuine appeals and complaints procedure in any situation where essential services are unfairly denied to those with disabilities and it must provide for meaningful progress and targets regarding issues associated with employment and access to buildings and services. I appeal to the Minister to take on board the various views and amendments being presented by all the parties and Members in this House when endeavouring to enact the best Bill possible.

One of the groups I have met over the years and which I have found to be very professional in dealing with disability is NAMHI. It has met the Minister and put its views on record. It is important that, in the context of this debate, its main concerns be put on record. Its first point is that: "Definitions of disability in the Bill are such that they will exclude many people even from an assessment." This needs to be teased out because it is a fundamental point in all the contributions and submissions we receive. NAMHI identifies the following as further concerns:

—There is no ring fencing of funding for disability.

—No link between an assessment report and the subsequent service statement.

—The Bill leaves the determination of assessments to individual health boards.

—This will inevitably lead to variations between regions.

—There is no timetable for accommodating the needs identified in the assessment report or for a plan to provide services over a set time frame.

—The Complaints and Appeals system is unnecessary, bureaucratic and cumbersome and is designed to limit enforcement.

—The Bill will create a new administrative structure on top of a system that has been criticised for being administratively top heavy and will eat into resources for services and front line staff.

—There are limitations on the obligations on Govt Departments and public bodies to make their buildings & services accessible to disabled people.

—There is no reference to making materials easy to read or in simple language for people with an intellectual disability.

In the context of work opportunities, I have had the opportunity in recent weeks to deal with a 25-year old lady with a severe disability whose mental capacity is fantastic. She wants to work but the only opportunity she had to enter the work environment was with another disability group on a community employment scheme. She did fantastic work and improved her capacity in every sense but was then told a two-year limit applied to people under 35 years in terms of extensions to the community employment schemes. I made representations to the Minister for Enterprise, Trade and Employment and, in fairness to him, he sent a response to me and the lady in question. She was very happy but she was only granted an extension of six months. There is a major difficulty in trying to get people with disabilities into the workforce. If exceptions can be made for people over 35 years such that their participation on community employment schemes can be extended, the position of people with disabilities should also be considered in this regard.

I acknowledge the commitment that has been made by Government to provide extra resources to deal with disabilities on an ongoing basis. Ultimately, we must ask who is to make the decisions and decide on priorities in the context of the needs of the disabled.

I refer again to people with intellectual disabilities, particularly those in St. Ita's Hospital, Portrane. I have raised this matter before with the Minister for Health and Children. St. Ita's was built in 1900 and was an asylum in its early years. Nothing in the Disability Bill indicates to me that there is a commitment to deal with the most vulnerable in society. I am sick and tired of the neglect of St. Ita's and its residents. Over the past 25 years the health board, with the approval of the Department of Health and Children, has embarked on a programme to run down St. Ita's with a promise of alternative accommodation. As a result, there has been little or no maintenance and the residents and staff are living with the consequences on a daily basis. This is not good enough.

The Declaration on the Rights of Mentally Retarded Persons, adopted by the United Nations, states people with a mental handicap have the same basic rights as any other citizens. The residents of St. Ita's have been short-changed. The Department of Health and Children is well aware of the situation. The Taoiseach, Deputy Bertie Ahern, visited the hospital as far back as 1996. The Minister of State at the Department of Health and Children, Deputy Tim O'Malley, has visited the hospital several times and, while he is proactive in providing services, there has still been no progress.

In 1998, the then Minister for Health and Children, Deputy Cowen, was well aware of the situation. He visited the hospital and announced with great fanfare a major development project therefor which had already been approved by the Northern Area Health Board and which awaited finance. The development project provided for 60 places at a bungalow-type facility to be built on the campus at St. Ita's. Day and other therapy services were to be relocated on campus and upgraded. Some of the existing units were also to be refurbished to provide appropriate accommodation for the remaining elderly residents.

We await a significant response to this. Planning permission has been approved and approval has been obtained from the Health Service Executive, yet, week after week and month after month, there is no response from the Government in respect of dealing with the people with intellectual disabilities at the hospital. Annie Ryan of St. Joseph's Association for the Mentally Handicapped brought the Department to the European Court and we were told support would be forthcoming. This is one example of many in which people in need who have no voice are pushed aside. This is not good enough.

I could elaborate at length on this Bill. The Commission on the Status of People with Disability concluded that there could be 360,000 people in this category in Ireland. This Bill does not entitle this number of people to a service. There is much to be done and we as legislators must try to put our thoughts and suggestions together to produce a Bill of which we can be proud. This is important for the people with disabilities who look to us for this. It is for us, and especially the Minister of State, to ensure that we do not take a blinkered approach to this but have an open agenda and do the best we can to produce the best legislation for people with disabilities.

See this speech in context