A decision by the Cabinet not to amend the Disability Bill is a severe disappointment to the disability community, Frank Conaty explains
The Government's Disability Bill is due shortly to enter committee stage in the Dáil. Yet people with disabilities and their support groups, the very people the legislation is designed to help, are united in their opposition to it, at least in its current form.
The difficulties faced by people with disabilities in Ireland are well documented: people living inappropriately in mental institutions, chronic lack of residential facilities, insufficient respite for carers, the absence of or inadequate occupational programmes for adults, lack of physical access and employment.
One of the main reasons for this is that services and programmes have largely been put in place on a pressurised, reactive basis or have been inherited from the old Ireland based on the charity/vocational model. As a result they are in large measure inadequate and in some cases seriously inappropriate and peppered with gaps and omissions.
According to the Government's own database, there are currently just under 1,900 people on waiting lists for residential or similar services. With even the most conservative cost estimates, the Minister for Finance's Budget day multi-annual funding package will still leave over 1,000 of these on the waiting list in 2009.
The disability community was looking to the Bill to improve matters, but in their view it is no advance and indeed may be regressive.
The pervasive difficulty with the Bill is that it is not rights-based but works from a perspective that sees disability as a problem and a possible threat to the resources of the State. Although the Bill does provide for a needs assessment, even this is effectively nobbled by the approach taken.
Any services identified as required by an individual will only be provided where "resources permit" and where "practicable". What this in effect means is that the State can determine if an identified need will be met and when it might be met.
The State has never engaged in a real sense with the principle that people with disabilities should have their essential needs met over time. If these are real "needs", that is something required to achieve a basic quality of life, then it is just and reasonable to expect the State to prioritise the allocation of resources to meet them, at least or until people with disabilities have equal access to human rights with their fellow citizens.
What is asked for here is a prioritising of resource allocation, not an exposure to a new or unknown drain on State resources. It is not as if the disability community wants the immediate realisation of all its needs; rather, it is looking for a progressive realisation of them, a principle recognised in UN treaties on human rights.
The Government has criticised this view as a call for the embedding of rights for people with disabilities in legislation in preference to the rights of the rest of society. Nothing could be further from the truth. The disability community simply wants legislative support for accessing the same rights as everyone else. This is what is meant by "rights-based" legislation. It is not the State's prerogative to bestow rights, but its responsibility to protect them, something this Bill does not do.
We must have the right as citizens to call on the courts or on other institutions, such as the Ombudsman, to mediate on our behalf. Any such mechanism, to be effective, must be independent and freely available to all on a timely basis. Yet this Bill's provisions are quite incredible. Where someone feels aggrieved by a decision (or lack of one) under the Bill's provisions, they are prohibited from taking the matter to court. This is clearly at odds with the State's obligations under international treaties.
What is even more incredible is that this is the very reason the previous attempt at a Disability Bill in 2000 failed.
The second problem with this aspect of the Bill is the replacement of the judicial system with a system for hearing complaints and appeals that is overly cumbersome and lacks any semblance of independence. The Bill provides for the appointment of six differing types of "officer" to deal with service provision, complaints, mediation and appeals. These officers will be appointed by the very departments charged with the provision of services, a complex bureaucratic structure which will lead to intolerable delays and be costly. The disability community has proposed a simpler model based on an ombudsman with the courts available as a last resort.
The Bill could be an important milestone in the development of an alternative future for people with disabilities. It could be an opportunity to start building a more tolerant and inclusive society, one built on the principle of equal rights for all. The disability community does not want to lose this opportunity and is perplexed and frustrated at the apparent inability of the Government to listen.
Is this conflict a result of a failure of Government, or of society generally, to understand the nature of disability? I do not believe the problem consists in a fundamental failure or unwillingness on the part of Government or society to understand the nature of disability, but rather a failure to understand and grasp the idea that at times politics with principle is not just possible but, if we are to move forward, is essential. What is needed now is leadership.
• Frank Conaty is chairman of the Galway Alliance of Parents and Carers and regional co-ordinator of the National Parents and Siblings Alliance. He lectures in business studies at NUIG.