Brendan Howlin (Wexford, Labour)

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.

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