SECOND OPINION: The new Disability Bill has caused revulsion and disappointment. Dr Sinead Ó Nualláin explains why
Parents of children with disabilities are deeply disappointed with the new Disability Bill, which they feel is betraying their children's rights.
Through their national organisations - the Forum for Disability and the National Parents' and Siblings' Alliance - these parents have expressed their revulsion at the Bill, and have informed the Government that it is unacceptable in its present form.
Couched in obscure legal wording, the Bill (which is going through the Oireachtas at present) makes for difficult reading.
It is certain that there are many for whom it will have serious implications, but the difficult wording means many will not be aware of the consequences until it becomes law.
Following the withdrawal of an earlier Disability Bill in 2001, the Minister for Justice, Equality and Law Reform established the Disability Legislation Consultation Group, to represent people with disabilities, their families and other interested parties in the formulating of a new Bill.
After countrywide debate, a document was submitted to the Government, outlining the core elements that the group unanimously agreed needed to be addressed in disability legislation.
Ignoring the recommendations of this document, the Government has now produced a Bill which is fundamentally flawed.
Pushing such a Bill through the Dáil in its present form seems unjust and indefensible.
Having worked for many years as a paediatrician in the area of disability, I can well understand why parents are so concerned about this new Bill.
I have seen how children's development can be seriously hampered by not having the required educational and therapeutic services at the appropriate age.
I know how very painful it is for parents when they realise that our Government, in denying their children access to the basic essential services which would make a profound difference to their quality of life, are ensuring that these children will end up even more impaired and dependant in adult life.
Parents have often felt obliged to take extreme measures to procure services, rather than see their children's needs being neglected.
Over the years, I have seen parents re-mortgage their homes to pay for expensive private services, move to different parts of the country where there were better services available, take their children abroad for help, at enormous personal inconvenience and expense, and even bring their cases to the courts in order to claim their children's rights.
People with disability and their families are in a particularly vulnerable position, being a minority group, who, through no fault of their own, have needs over and above the requirements of many others in society.
Children and adults with disability have special educational needs, and require multidisciplinary professional services for the purposes of assessments and ongoing guidelines and therapies.
Adults have needs for special training and employment opportunities.
Parents and families constantly caring for their children are in desperate need of respite and family support services.
Children, as they grow into adulthood, often need appropriate accommodation outside of their parents' homes.
Given that disability is a natural phenomenon of human life and that people are totally dependent on having these services for their wellbeing, it is surely not unrealistic to expect the State to fulfil its obligations in this respect - especially considering the economic boom that the country has been enjoying for the past number of years.
Mr Cowen's prioritisation of disability in this year's Budget is to be warmly welcomed.
His substantial package for disability will undoubtedly enhance the lives of many in the years up to 2009.
There is, however, no guarantee that his successors will have a similar commitment to disability.
Hard experience has taught parents that disability is easily side-tracked, and that in a less favourable economic climate, the case of a child in acute and long-standing need of speech therapy, for example, stands little chance against that of a child with an acute appendix.
They cannot afford to let the generosity of a Minister blind them to the fact that legislation for rights is their only guarantee of services.
Although parents have made it vehemently clear that a legal right to basic services would have to be a core element of legislation, this has not being granted.
Instead, phrases such as "where resources allow" and "where practicable" are used in the Bill to indicate that the availability of services will still be subject to the whim of the Government.
Not only is there no onus on the Government to provide essential services, but the Bill goes even further, in making it almost impossible for parents to resort to the courts.
While making no reference to the multidisciplinary services that are so urgently required, the Bill proposes to establish a costly and cumbersome administrative network of assessment officers, liaison officers, complaints officers and appeals officers, without making it clear whether such officers would have suitable professional backgrounds for this work, or whether they might, perhaps, be former non-professional employees of health boards.
We must ask if disability funding is now about to be diverted to the creation of a plethora of administrative posts in a new bureaucracy.
Against best modern practice, the Bill also appears to ignore the rights of disabled people to have their views and preferences taken into account in service provision, and the rights of parents and carers to be involved in decision-making on behalf of children.
With a new Minister for Finance, who seems very much aware of the need for social reform, and a Government anxious to create a more favourable social image, acceding to the wishes of the most vulnerable in our society in order to amend this oppressive Bill, seems the obvious way forward.
If it does go ahead without reform, the injustices and inequalities that many disabled people and their families have experienced up to now are liable to continue indefinitely.
Dr Sinead Ó Nualláin recently retired from the post of medical director of the Brothers of Charity Disability Services, Western Health Board Region. She is a consultant paediatrician.