Michael Lowry (Tipperary North, Independent)

I welcome this opportunity to speak on the Bill which is, perhaps, one of the most important and challenging in recent years. I have a particular interest in this area, having a daughter working in the field of special needs care. I, like many of my colleagues in this Chamber and in the Seanad, have been inundated with letters and phone calls from worried parents, disability groups, carer associations and national representative groups, all of whom are extremely concerned about the impact this Bill will have on people with disabilities. It is often said that the measure of any nation can be seen in how it cares for the weakest members of its society. Among the weakest in our society are the old, the young, the sick, the poor and the disabled.

The Government has presided over a series of major blows delivered to the weakest members of our society. The elderly are extremely worried about the ever-increasing cost of health care and nursing home bills. It is generally accepted that the Irish health care service is in disarray as a result of years of bungling and mismanagement. We are told that young people in our society never had it so good, yet alcohol, drug abuse and suicide among young people is at all time record levels. The rising tide of the Celtic tiger has failed to lift the rowing boats of Ireland's poor. On top of this, the Government is intent on bringing further hardship and hassle to the weakest in our society, the disabled.

For many years disabled groups were promised rights-based legislation which would guarantee a disabled person the right to services and support. They have been promised specialist services to meet their needs. They have been promised clear, concise and straight­forward procedures to minimise bureaucracy faced by them.

Unfortunately, the Disability Bill does not cater for the weak and the vulnerable. It does not honour the previous promises to disabled groups. It will not cater for even the most mildly disabled person in society. It will legislate to ensure that a mildly disabled person is not considered disabled. The Institute for Design and Disability has referred to these people as the "undisabled"— being neither non-disabled nor recognised as disabled, they will be completely excluded from accessing any service. This will be a disaster for many, particularly the mildly disabled. It will be detrimental for any person who currently does not need to access services but who may need to do so in the future.

The definition of "disability" used in the Bill is far too restrictive. By using this restrictive definition many people receiving support and services from the State will be excluded under this Bill and will not be considered to be disabled. The Bill defines "disability" as meaning a substantial restriction in the capacity of the person to carry on a profession, business or occupation or to participate in social or cultural life by reason of an enduring physical, sensory, mental health or intellectual impairment.

The definition is narrowed further in section 6 where "substantial restriction" is defined as a combination of three distinct conditions, all of which must present a restriction that is permanent or likely to be permanent, results in a significant difficulty in communication, learning or mobility and gives rise to a need for services to be provided for the person on a continuous basis.

This definition excludes a substantial number of the disabled persons referred to in the report of the Commission on the Status of People with Disabilities. It also excludes those who qualify as disabled under the Equal Status Acts 2000 and 2004 and the Employment Equality Acts 1998 and 2004.

I am deeply disappointed the definition used in the Equal Status Act was not used in the Disability Bill. If the Bill is enacted without changing the definition of "disability" it will undoubtedly undermine all other Acts of legislation such as the Equal Status Acts and the Employment Equality Acts.

From the brief legal advice available to me on these varying definitions it appears that if the Disability Bill is passed with this narrow and restrictive definition it could result in a rush to secure services through the courts because of the discrepancies. If the Bill is enacted, the contradictions between the two pieces of legislation may leave the State open to a long and protracted legal battle. I urge the Minister for Justice, Equality and Law Reform to seek immediate legal advice on the matter. The Tánaiste and Minister for Health and Children should seek her own legal advice on the same issue.

Under the Equal Status Act, a person with dyslexia or other learning difficulties is recognised legally as having a disability. However, under the Disability Bill such legal recognition does not exist. Many with dyslexia, once it is recognised, can avail of several learning aids which enable a dyslexia sufferer to learn at what is considered a normal pace.

In primary and post-primary schools and third level institutions there are provisions in place to identify and assist people with all learning difficulties. Most of these provisions were rolled out over the past three to four years. Under the Disability Bill the Department of Education and Science could legally renege on obligations to provide resources for those with learning difficulties. There are elements of the Bill which can be interpreted to mean that a Minister and Department can be exempted from allocating funds to disability initiatives.

I am disappointed the Bill does not provide for an independent assessment of needs. In the proposed legislation, assessment officers are responsible for deciding what services a person needs and liaison officers are responsible for arranging the delivery of services. These officers will have enormous power in deciding the level of service, if any, a disabled person will receive. However, these officers will not be truly independent because they will be employed by the Health Service Executive.

The complaints and appeals system as proposed is so complex and bureaucratic that it will only serve to discourage people with disabilities or their representatives from using it. It is widely acknowledged that people with disabilities and their families endure considerable difficulties in attempting to secure services. The essence of any disability Bill must be to reduce the amount of red tape for those with disabilities. Unfortunately, this Bill will not achieve that objective. This is surely a further example of how the weakest in society are blatantly ignored.

It is shocking that there are no references in the Bill to the multi­disciplinary services that are so urgently required. The Bill proposes to establish a very costly and cumbersome administrative network of assessment officers, liaison officers, complaints officers and appeals officers, without giving any clear indication of the professional backgrounds needed for this type of work or whether they may be former non­professional employees of the health service. The creation of such a bureaucracy must be questioned. Precious disability funding and resources must not be used to build a plethora of administrative posts when it is front-line specialists such as physiotherapists, special needs teachers and assistants, speech and language therapists and others who are so urgently required.

This Bill signals the beginning of a bureaucratic nightmare for people with disabilities and their families as they search frantically for essential services which will be wrapped up in red tape and hidden from those most in need of quality services and care. With this inflated bureaucracy proposed by the Government, it has failed to consider the implications of the Disability Bill on an already crisis-ridden health service.

Currently the HSE is not in a position to offer people with disabilities in different parts of the country the same level of service. Certain services are available for those residing in Templeogue, whereas different services are available for those in Tralee and they are different again in Thurles. There is not a uniform service in every part of the country for those suffering with the same disabilities.

The parents of an autistic five year old in Birr, County Offaly, contacted me. They have been sending their young girl to Scoil Naomh Áine, a special needs pre-school in Roscrea. The HSE midland region had been contributing to the pre-school with the HSE mid-western region. In recent months, parents have learned that the pre-school is to close with effect from June 2005. Parents were originally informed that their special needs children would be accommodated in mainstream child care centres, yet there are no such facilities in the area. Then the parents concerned were told that their child would instead have two hours of respite per week. All this, however, has been taken away and they have been told that the pre-school will close with no replacement service available.

On the other hand, the children who reside in the Roscrea area, which is in the mid-western region, will be offered a service from the north Tipperary early intervention services. This is proof of inequality in the delivery of services. I question the equality of opportunity presented by this Bill. Equality of opportunity has been air-brushed from the Statute Book by the Disability Bill.

I compare this situation to that of the Guardian Angel pre-school in Thurles, which has been winding down its services in recent years. It stopped taking in new children a few years ago, while continuing to cater for the current special needs children until they are transferred to a mainstream or special needs primary school. This is a school with very strong bonds to the local community. It was set up by workers in the Thurles sugar factory in the 1970s. The Guardian Angel pre-school has always been recognised as providing an excellent level of service for special needs children in the area. Local fundraising down through the years has enabled the Guardian Angel pre-school to provide state-of-the-art quality of care for special needs children. There is bitter disappointment in Thurles and the surrounding areas that the school is to close. The official line is that it is not closing but changing to become a resource centre with physiotherapists and many other specialists offering services for special needs children.

I raise the situation regarding these two special needs pre-schools because both schools are, in effect, closing. Parents of disabled children in the HSE mid­western region have been promised a level of service. While they have grave reservations about the new service offered, the experts say it is the best in international practice. Time will tell if the parents' concerns were justified. My hope, for everyone's sake, is that the experts are right.

Fifteen miles down the road from Roscrea, parents whose children attended the special needs primary school are having every single service available to them removed by the HSE midland region, which will no longer provide funding for an organisation in north Tipperary, despite Roscrea being nearer for the families involved and despite the excellent service offered by the local pre-school. It appears that those in Birr will get nothing. They were not consulted on this matter. They now have no pre-school, no respite and no service, and all this is taking place under the new integrated health service.

I fear that this Bill will exempt the HSE from having to provide the basic minimum services for people with disabilities, particularly in areas where the HSE regions overlap. A person in Thurles should have the same access to services as a person from Templeogue. Geography and location should not be used to discriminate against the disabled in society.

I have been contacted by several groups expressing both gratitude and worry almost in the same breath. The announcement in the budget of multi-annual funding of €894 million in 2006-09 was most welcome. I acknowledge the importance and significance of the funding. However, it is important to address four main areas of concern. First, people with disabilities are looking for equality — funding is only part of the solution. Rights-based disability legislation and the force of law is central and is absolutely necessary to ensure that people with disabilities can become truly equal citizens of Ireland. Second, people with disabilities want services as a right and not only when extra resources are available to the Government. Funding can be provided for a few years and then withdrawn when the budget is tight. Why are the weakest in our society always the first to suffer when the tiger no longer roars? Third, the system to date has failed many people with disabilities. Many do not have the services they badly need or only have access to services now and again. A rights-based disability Bill will put the person at the centre of the system. Giving people with disabilities the specialist services they need has maximum value in terms of public spending if they can fully access all public services such as transport, education, housing, training and so forth.

A rights-based disability Bill will have social and economic benefits for all, as people will get the supports and services they need to make the contribution to our society which they are currently being denied.

The issue of funding for disabilities is clearly of concern to anyone with a disabled family member, friend or relative. The Bill does not guarantee the ring-fencing of funding for disability services and supports. There have been wild claims that the Bill ensures that a Minister must set aside resources that can only be used for disability. However, the Bill limits what a Minister can spend on disability services. To add insult to injury, the Bill also states that funding for disability services will only be provided after all other demands have been met by the Minister.

I reiterate my earlier point that the Disability Bill undermines the Equal Status Act, not only with regard to the definition of disability but also with regard to section 14 of the Equal Status Act. Section 14 states that nothing in the Equal Status Act should be construed as prohibiting the taking of action required by court orders, EU treaties and international conventions or where the taking of positive measures are intended to promote equality of opportunity or cater for the special needs of a disabled person.

The measure of this nation will be our care for the weakest in society in the years ahead. People with disabilities are among the weakest in society and the Disability Bill fails to measure up to their needs. It will fail to meet the needs of the disabled by making the mildly disabled non-existent in the system. They have become known as the "undisabled". It will fail to meet the needs of the disabled by undermining reams of existing legislation such as the Equal Status Act, with a different, more restrictive, narrower definition of disability. It will fail to meet the needs of the disabled by creating a horrendous, outlandish, bureaucratic officialdom which will deny services for the disabled.

See this speech in context