The traditional picture of the provision of services to people with disabilities is of a well-meaning, hardworking, under-funded and substantially voluntary sector doing its best to help individuals cope with various disadvantages.
Of course this is a simplification: there is considerable professionalism among the various service providers. The State's attitude to and services for the disabled have moved on in recent years. As the National Disability Authority itself says: "From a late start and poor historical record, Ireland now ranks high on any list of nations considered progressive and innovative in the disability field."
Nevertheless, people with disabilities give mixed reviews to the various organisations that provide services, with some described as excellent but others as below an acceptable standard. The organisations criticised are accused of inefficiency and poor scheduling of assessments and treatment. Crucially, a culture of voluntarism - forced on many organisations through under-funding in the past - means there is no assessment and monitoring of the output and efficiency of such bodies.
The submission made by the National Disability Authority earlier this month, details of which are published in this newspaper today, is designed to ensure the imminent Disabilities Bill overthrows the old traditional model. Its proposed "individualising" of service delivery is a radical proposal to move power into the hands of the person with the disability, and in so doing to introduce competition and greater efficiency into the sector.
The core proposal of the document is straightforward: funding now given to bodies such as Rehab, the Central Remedial Clinic, Cerebral Palsy Ireland (now known as Enable Ireland) and the many other such bodies would be given to the people those bodies are serving. The individual could then shop around, choosing where to buy the services needed, rather than be dependent on one provider.
This does not necessarily imply criticism of the service providers. But the promoters of the change believe the introduction of the business concepts of incentivisation and competition will transform the sector.
According to the submission, most analysts estimate that an average of 10 per cent of the population has a disability. The National Disability Authority was set up by the Government as part of a new approach to disability.
Minister of State Ms Mary Wallace is praised within the sector as having had some success in getting Government funding for the area, and for leading a number of important reforms.
Most significant so far was the announcement earlier this year that from now on State services will be provided to people with disabilities by the same people and organisations that supply them to everybody else. Hailed by the Taoiseach as a "dramatic shift" in policy, the move will make all agencies realise, as Mr Ahern put it, that "disability is no longer an area to be dealt with by someone else".
Now the Government is planning a major piece of legislation in the area, the Disabilities Bill, designed to ensure people with disabilities can participate as equals in society. The submission from the new National Disability Authority is perhaps the outside contribution that will carry the greatest weight.
The radical nature of the submission reflects a strong declaration of independence by the new authority. It is based on 39 submissions the authority received from voluntary organisations, individuals with disabilities, carers, State and professional organisations, IBEC and ICTU.
Central to the paper is the notion of "individualising service delivery" - in other words, funding the individual who needs services rather than the organisation which provides the services.
So, instead of paying the Irish Wheelchair Association, Rehab, Enable Ireland and the dozens of other providers directly as at present, the money would be given to the person with the disability, based on an annual assessment of their needs. People needing physiotherapy, training, crutches, a wheelchair or other therapy and material could choose where to get it, rather than be dependent on whatever is offered to them by the system. "The payment should be directly to the person to whom it is assigned and that person has the right to spend the money as they themselves determine," the authority says.
Currently, carers and parents of disabled people complain that they have no rights in the area of service provision and few choices on matters such as where to send somebody for assessment. As a result, children with disabilities in particular feel segregated and ghettoised as they are forced to go for the limited or only option available in terms of service provision.
THE authority's proposals, based on submissions from interests in the sector, were submitted to Ms Wallace earlier this month. The Disabilities Bill has been promised since 1997. The heads of the Bill are finally expected by the end of this year with the full Bill to be published early next year.
The authority also wants to regulate the circumstances as to when medical tests can be insisted upon, how they should be carried out and how the information is subsequently used. In particular, it says that while such tests often reveal a condition or disability, they can result in a person being rejected for a job "in circumstances where the disability detected through medical testing has nothing to do with the performance of the essential functions of that job".
Genetic testing causes more concern, according to the authority. The tests are now highly accurate and can predict if and when a person will suffer a disabling illness or disease. The authority recommends that such testing be carried out only for health or research reasons, rather than, for example, to allow insurance companies, employers and others plan for the future.
It also proposes setting standards in law in the area of service delivery. These would include access, choice and confidentiality, the right to complain and a requirement that service providers meet efficiency standards.
The authority also recommends enshrining in the legislation a right to an individual assessment of needs, to participate in planning services provided for them and for people in institutional care to live in the least restrictive environment.
Without major change, individuals will continue to take High Court and ultimately Supreme Court cases seeking provision of services on the grounds that non-provision is in breach of their constitutional rights. The authority argues that its proposals will avoid this, and ensure that "human difference is now regarded as an enriching factor in Irish life".
The NDA is chaired by the chief executive of Rehab Care, Ms Angela Kerins. It has 20 members, 13 of whom either have disabilities or have children with disabilities. Three members represent service providers and four represent the employers, unions and responsible Government departments.