Jerry Cowley (Mayo, Independent)

This legislation once again represents a squandered opportunity. There was a chance to contribute handsomely to an inclusive society where disabled people would be accorded some semblance of equality. Unfortunately, the story has remained the same, since they are still excluded from being equal citizens. Disabled people expected to have the same enforceable rights as everyone else. Why should they not, and why should such people as Kathy Sinnott have to go to court to secure basic educational rights for their children? Effective legislation should encompass positive rights that can be enforced and also duties and responsibilities that can be placed on public and private bodies that provide services to the public. The idea is to remove the barriers, placing disabled people centre stage, or at least, if at all possible, giving them greater equality.

However, they are not equal. At the time of the 2002 census, only 26% of people with disabilities in the main working age group of 20 to 64 years were in work, compared with 70% of the rest of the population. There is no excuse whatsoever for that. A booklet issued by the Disability Legislation Consultation Group is entitled Equal Citizens: Proposals for Core Elements of Disability Legislation. It appears the Government was going to do everything right. It ensured that the DLCG came into being. It wrote to everyone and got everyone on board, but what has come out is certainly not what is in that book. The book shows the signposts. If there were a breach of this legislation once enacted, that should be construed as discrimination under the Equal Status Act 2000. If it were so construed, it would be under the remit of the Equality Authority and the Office of the Director of Equality Investigations. These too are lost opportunities.

It is true that the Minister for Finance, Deputy Cowen, has provided substantial funding, but that was easy, since he was coming from a low base. Will it be sustained? The Bill allows wholesale opt-outs for Ministers to get themselves off the hook. When funds are scarce, the disabled are certainly those who suffer, and this Bill ensures that exactly that will happen. The independent assessment of need is a joke. Health and education are certainly covered, but what about housing? If one does not have a place to live, what good is education? What if someone has to wait three years to get an assessment to find out his or her housing needs? What good is that? The form that we will have to fill out is a massive document.

The recommendation can be appealed to an appeals officer, but that decision is final and can only be appealed to the High Court on a point of law. It is clear the Bill is an attempt to do people out of their right to go to court. Parents want to secure those rights for their children, but they cannot, since there is no appeal except on a point of law. It would appear there should be a right to an advocate, but not to the type of advocate who might secure equality to disabled people. There is no right to a legal representative, which is a usurpation of civil rights under EU law. The legislation exists, and we have signed up to it. Where is the fair representation and where is the equality? There is certainly a strong case in terms of EU law.

All the appeals take place within the realm of the service, denying people their right to independent assessment. People are paid by the same bodies, and he who pays the piper calls the tune. There is no mechanism to resolve that, and the system is very biased. The control of the assessment, complaints and appeals system lies with the Health Service Executive, raising major questions about how this legislation is to work. One should hear the Mayo Autism Support Association in my county. They can tell one exactly what is happening. They are crying out for the rights-based legislation for which they had hoped and for medical cards for family members with autism. The Department of Education and Science and the Department of Health and Children seem to have no joined-up thinking on what this is all about. When it comes to sorting out the person with the disability or autism, responsibility is passed from one to the other; they are tossed between Departments. There is a total lack of occupational and speech therapists, and a lack of respite care. Schools must examine their policies towards children. Where is the joined-up thinking that is needed for those people? It is simply not there.

In the Disability Bill 2004, there are so many opt-out clauses that it will seriously impair disabled people from accessing services. The Government does not even have to provide services under the Bill if it is deemed too impractical or costly in the context of available financial resources. Phrases such as "not possible or practical to provide", "appropriate allocations", "availability of resources" and "budget priorities" clearly outline the Bill's commitment to ensuring that those with disabilities receive the necessary services. Why should disabled people not expect to be treated equally with able-bodied people so that they can fully participate in and contribute to society? It is a crying shame that the Bill offers only conditional rights that depend on the State and the public finances. It falls far short of the rights-based legislation that everyone had hoped for and for which various disability groups had campaigned. It flies in the face of An Agreed Programme for Government 2002-2007's solemn undertaking to include provision for enforceable rights of assessment and appeals on service provision. That has been utterly abandoned.

Section 6(2) of the Bill deals with interpretations, stating that

In the definition of ''disability'' in section 2, ''substantial restriction'' shall be construed, for the purposes of this Part, as meaning a restriction which 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 to the person continually.

The rub lies in the word "continually". Someone who is blind would not qualify under this legislation. It could be enormously restrictive regarding those who may receive an assessment or service. Most people who require access to a product or service will need it on an occasional or regular basis but rarely continually. The whole definition of disability is far too narrow, excluding episodic conditions and early intervention needs. It appears to be attempting to divide and conquer the disability community. A young man seeking services, speech therapy or special teaching aids is left waiting. He is not realising his potential and will not do so. A great opportunity has been missed.

Unfortunately, people are suffering because of that. In the past, early intervention has proven to be the key to the effective remediation of a person with disability. We have all heard the saying, "a stitch in time saves nine". In the same way, early and effective intervention in the early stages of a child's development will often preclude the necessity for considerably more expensive intervention at a later stage, but that is not happening. People, like the young man to whom I referred earlier are being left on the shelf, so to speak, at a stage when the child's condition would be infinitely more pliable in that remedial and rehabilitation therapy would work. In the longer term it would prove financially viable, which comes back to the value for money everyone seeks. That is in the Bill but not in what is being proposed.

Section 7(1), which deals with assessment of needs, states that assessment officers will be appointed by health board chief executive officers. That is not independent assessment. The assessors must be independent of the organisations that eventually will have to provide a service.

Section 7(b)(ii) states that the assessment report is confined to health and educational matters but it must relate to all the needs of the person and not merely health and educational matters.

Speech and language therapy is another important area. Many people are awaiting those services but services in Ireland are just playing catch-up, and that will continue to be the case for years to come. In 1975 in the United Kingdom, the Quirk report on speech and language therapy provision recommended that the optimum minimum requirement for this service was one therapist per 10,000 of population. If that were applied to the Republic of Ireland, it would represent a basic need for 310 therapists in 1975 — almost 30 years ago. However, in the latter end of the 1980s, 23 years after Quirk reported, our total complement here was a mere 95 speech and language therapists. Is it any wonder we cannot get speech and language services or that people who have suffered strokes are languishing without that service? Is it any wonder that children are languishing without the essential services they need to give them a chance in life? I understand the current complement of therapists is approximately 170. That is a disgraceful figure 29 years after Quirk's report recommended more than 300 therapists. That is the type of shoddy service the Bill is bringing forward, and I fear for its implementation and the future of services for the disabled.

The withdrawal of services provided by special needs assistants and resource teachers in schools continues apace. Croke Park was barely emptied after last year's Special Olympics when Department reviews of special needs assistance and resource provision began in schools. Inspectors were delegated to sit in school rooms and preside over the dismemberment of a service that, for the first time, had given pupils with learning disabilities a chance to catch up. That was a pruning exercise and a gung-ho approach by the Department that was totally unacceptable.

We have the farcical situation where a child in sixth class was notified on 26 June that he had been granted resource hours, despite the fact that he had long left the school. The practice of informing parents that these services were being withdrawn after schools had closed for summer holidays was sneaky and reprehensible and something of which the Department should be ashamed.

The Bill also ignores the needs of people with disabilities who are not sick and who have left the education system, such as those in employment or those seeking employment in the open market. The assessment also fails to cover the needs of a parent or guardian who is supporting or caring for the person with a disability. Their needs should be included in the Bill also.

Under section 10(1), regarding the service statement, the health board will nominate the liaison officers to write the report. Those liaison officers must be independent.

Section 10(6) requires the liaison officer, in the preparation of a service statement, to have regard, inter alia, to "the practicability of providing the service". The woolliness of such terminology would appear to confirm its insertion as another opt-out clause for the State's responsibility in service provision.

The proposed complaints system requires simplification. It must be made more accessible and user friendly since its very complexity would pose enormous difficulties for many parents. Under sections 14 and 15, complaints officers, appeals officers and mediation officers will be appointed by the health board chief executive, the Minister and the appeals officer, respectively. They must be independent. The appeals system must be truly independent of the Department of Health and Children. Otherwise, how can it retain the confidence of parents?

The Bill's claim that the assessment and appeals procedures are independent is literally firing out the seeds of hope but, unfortunately, it is also hoodwinking people into believing that these procedures are truly independent. The position is that the Bill does not provide a clear right to a genuinely independent assessment of the disabled person's needs, and that must be a prominent feature of the finished legislation. The Bill fails to provide for a child's unmet needs as identified in the assessment, the independence of which is questionable, on an annual basis or as changing circumstances would require.

The provision of disability specific resources should be clearly ring-fenced. People with disabilities deserve and are entitled to nothing less. It is not a case of services being granted at the grace and favour of a Government, the Department of Health and Children or appointed officials but, rather, the civil and human rights of those persons who have to cope with enormous difficulties in their daily existence.

Public agencies catering for the wider needs of disabled persons, such as housing accommodation, do not appear to have been provided for in the Bill. Both statutory and non-statutory bodies that provide public services must be accessible to the disabled. After all, disabled people need a house to live in and lifetime adaptable housing is something that could have been provided for in the Bill. That would have been easy to do and would have meant so much to those people in the future.

The development of sectoral plans across six Departments would appear, at first glance, to represent a significant response to the complex and varied needs of disabled people. I propose the appointment of a Minister of State with responsibility for the affairs of the disabled. That would represent the most effective vehicle for the co-ordination and implementation of the sectoral plans that transcend six Departments.

See this speech in context