I am glad to have a brief opportunity to speak on this Bill, which when enacted will change the name of Comhairle so it may be known in the English language as the "Citizens Information Board" or in Irish as "An Bord um Fhaisnéis do Shaoránaigh". The Bill is to amend and in particular to confer a function on it to provide or arrange for the provision of a personal advocacy service to certain persons with disabilities, to make certain changes to its membership and provide for related matters. I heard Deputy Carey suggesting earlier that "An Bord Eolais" should be used for information rather than the more convoluted Irish version of the title for the amended Bill. I trust the Minister might take this on board on Committee Stage, or perhaps indicate in his closing speech why we need to use more terminology than is necessary. In the context of a country which is trying to promote the Irish language, with only a minority of people fluent, it is crucial we use terminology that is as simplified as possible, rather than making matters more difficult.
I congratulate the rehabilitation organisations, FÁS, the various aspects of the HSE and in particular the voluntary sector, in Donegal and throughout the country, for the massive work that is being done in advocacy and in the provision of support for people with disabilities. It has not as yet reached the level that is needed, but without doubt it is improving. I see this regularly in my constituency where I am asked to hand out certificates for various self improvement courses. Recently the various organisations in Donegal provided free technology facilities for people with disabilities to enable them to participate in anything from ECDL courses to health and safety modules so they can become better qualified in the jobs they are doing. These are important opportunities for people to expand their abilities and to become as integrated as possible with their societies and communities.
As a nation we provide a great many services across a whole gambit of fields. However, in the global age of branding and marketing, we are relatively poor at communicating our message to the people who need it most, regardless of whether it is through grants for third level education, employment opportunities or services for people with disabilities. I strongly welcome the move by the Minister for Social and Family Affairs, Deputy Brennan, to change the name of Comhairle to citizens information board and to secure a countrywide branded image associated with citizens information. Like a small business that grows rapidly, we as a nation need to consolidate before we grow further. We need to refine, improve, promote and most of all effectively communicate the message we wish people to receive. In terms of services for people with disabilities, there is no denying we have come a long way. This is due to a whole range of people, from voluntary and support groups, to charitable organisations, health care professionals through the HSE and of course the individuals themselves and their families. We see high profile support through the Special Olympics in every county and parish in the country. This is having an untold positive impact, not only because of awareness raising, but in terms of integration and showing people there are no limits to what they can do if they are supported appropriately.
In Donegal, we came from such a low baseline not so long ago, that the sector considered there was nothing to be lost. This has meant that Donegal is now leading the way in many innovative pilot projects and quite often the approach to community support services for people with disabilities there is being discussed as best practice models throughout Europe. Just look at the Donegal Cheese plant where 75% of the workforce have a disability — but that is not how they promote themselves. They are just a normal company fighting to sustain and grow their business like everyone else. However, they need to be regarded as a business by the State and they are suffering, unusually, in terms of regulations on EU standards for employment rights. They do not want the rights being imposed upon them, but because they are a business they are being told their employees must be entitled to pensions etc. The Department, in effect, is forcing the company to re-examine what it does and to diversify from what it has been doing for a number of years. It is an unusual situation in that the fight to give people rights against their will means that what they have been doing for a number of years is being compromised and will possibly be taken away from them. Their employee rights are being forced upon them when all they want is to continue working with the same degree of flexibility as heretofore, to allow them to meet medical appointments. These workers are not in it for the money. Their views are important, too. In terms of that type of situation the views of people with disabilities need to be ascertained just as much as EU regulations on rights need to be imposed.
While we continue to work towards services for people with disabilities, we need to improve our acceptance and understanding of the conditions in question. How do we diagnose and measure the extent of a disability? There is no universal right or wrong in this regard, and I am finding this very much in terms of conditions such as Asperger's syndrome, for example, which not every GP is able to diagnose. Much of the time children are either undiagnosed or misdiagnosed. It therefore becomes more difficult to deal with the condition in the classroom setting. I came across a case in which an educational psychologist told the parents in question that they should toilet train their child. The parents asked whether the educational psychologist believed, on the basis of the child's age, that they had not tried to do so. They could not train the child because it turned out it had a particular syndrome that had not been diagnosed. People had been regarding the child merely as a child without toilet training rather than one with a certain syndrome. The issue of diagnosis is therefore very important.
Many parents struggle throughout their lives to have their sons or daughters diagnosed. Even with the advances in modern medicine or genetics, this is not always possible. Not only must a family face uncertainty, it must also battle for services if the child's condition is undiagnosed or does not fall into a neat category among the list of common conditions.
Planning services is difficult in such cases. Extra resources and greater understanding of the pressures and strains parents face are required. They should be treated with compassion because quite often they are just entering new territory and are feeling their way in the dark. This is why the Bill is so important.
Consider the measurement of the severity of disability. In respect of autism, for example, some professionals are using one tool of measurement rather than another despite there being autism-specific measurement tools. There should be greater flexibility and more widespread use of the tools required for the individuals in question. These areas require attention if we are to adopt the person-centred approach.
Many patients with communication difficulties do not have the right to non-verbal forms of intervention, such as art therapy, which are being proven internationally. I recently conducted a study of music therapy and found it quite shocking that in Ireland, which is well advanced technologically and educationally, we do not recognise or define it as a profession. We therefore expect music therapists, who have spent four years obtaining degrees and who have obtained Masters degrees, to be paid as caretakers in hospitals. This does not happen in Northern Ireland, Great Britain, the United States, Australia or New Zealand. If we are to provide access to information, we must also provide access to services. Thus, we must define music therapy in the health care professionals legislation, which passed through the House last year. We are losing our music therapists to Northern Ireland and elsewhere because they are paid properly everywhere except in the Republic of Ireland.
The multidisciplinary, person-centred approach to planning and delivering services is the most effective. We talk of it in respect of home care packages for the elderly and sick but it is important that it also be applied in respect of the disabled. The role of the personal advocacy service should start at birth and continue throughout a person's life.
We often talk of the negative aspects of hospitals but there are positive examples of the system working well. I am aware of a specific case in which a child was born in Letterkenny General Hospital with abnormal features. These were identified by the consultant paediatrician after running a series of tests. Through the tests it was discovered that the child has an extremely rare genetic condition, of which there are only three other published cases in the world. The foresight of the paediatrician was such that the baby was referred to every service conceivable from the outset. While this meant much travel and many appointments for the parents initially, the services that were not needed were discounted one by one. From the outset, the parents adopted the multidisciplinary approach to planning services for their child and were given a point of contact from a medical perspective through a paediatric link nurse whom they can call for advice. They can obtain support from the counsellor for special needs.
The child is now five and is making great progress within the system. Compare this with the scenario that would obtain if there were no diagnosis at birth. In such circumstances, parents would battle to enter the system and find out when their child is 12 that they had been entitled to a domiciliary care allowance.
While multidisciplinary team meetings continue for the child born in Letterkenny General Hospital, more resources are needed to support such teams' work. More adequately qualified professionals and continuity of service provision are required. SENOs are not qualified in special needs specifically and this causes great trauma for the parents.
Where a person is born with a disability or syndrome that will last for life why is that person's eligibility for a medical card continually reviewed? Why are such individuals brought before boards to ascertain the extent of their disability year in, year out? This must be addressed. If one is born with a problem to which science has not found a solution, one should not have to assert one's rights continually. While providing support and advocacy services in this Bill, we should also remove the hurdles that do not need to exist.