Ms Lorraine Dempsey:

Our children would be familiar with presentations. I commend Mr. McPhillips for his speech today. He opened up on the difficulties that we experience. Our primary problem is fighting for supports for our children. It is not fighting the disability or the rare disorder, or the condition itself. We can cope with that. What we cannot cope with is the continuous fighting for supports. It is within the gift of the committee to help us.

I will touch on the psychological impact of waiting for a diagnosis. I have described the pitfalls in the gap between a parent getting a diagnosis and having a discussion on the diagnosis and the long-term prognosis.

In the past 48 hours we polled the members of the organisation whose children have very rare disorders with a view to finding out what disorders the families are dealing with. The list is too long to mention. By engaging in that process over the past 48 hours, parents have started to connect on a simple online forum. We have parents who have a child, who is the only person in Ireland or in some cases the world with a particular diagnosis. It is very difficult to provide a service. We can be empathetic and understanding, but it is difficult and the only place in which these parents can get clear and accurate information would be a centralised office where the information can be screened safely and given to them with support.

I also thank Deputy Ó Caoláin for acknowledging the fact that we are a voluntary organisation, which I head up by working full time on a voluntary basis. I am fortunate to be in a position to do so.

Senator Burke raised the issue of the difficulties with the treatment abroad scheme. There is one diagnosis in particular where those who have this diagnosis seem to have constant battles with the treatment abroad scheme. There are no specialist to treat Ehlers-Danlos syndrome in Ireland. We deal with a bureaucracy and there is no specialist to refer them to specialist centres abroad. That seems to be an ironic sticking point in the treatment abroad scheme and its administration.

Deputy McLellan raised issues that arise in the period of transition from children to adults, such as what happens in respect of domiciliary care allowance, carer's allowance and disability allowance. The domiciliary care allowance was reviewed last year and at present the recommendations that were sanctioned by the Minister are being implemented. I am involved in the implementation group in the Department. The transition period from domiciliary care allowance to disability allowance is being addressed in the implementation of a more refined scheme. It is hoped that parents will get longer advanced notification of the application process for the disability allowance which comes into effect when the young person reaches the age of 16 years and this should give them time to get the relevant reports. Parents need to understand that domiciliary care allowance and carer's allowance and disability allowance are very different entitlement with different criteria under the social welfare legislation. Disability allowance is not an allowance for people who require care, it is an allowance for people who cannot work as a result of his or her disability, whatever it may be. There is a distinction between domiciliary care allowance and disability allowance, and parents who would have received a domiciliary care allowance for their child under 16 years may find that on reaching 16 years, their young person does not qualify for a disability allowance. Parents must be educated about these distinctions.

Obviously we have been discussing how medical assessor in the Department of Health deal with those with rare disorders. We have raised points about the awareness of general practitioners. The 40 or so medical assessors are not specialists in any particular field. They need to be able to find information on the impacts of the various different rare disorders. There are 6,000 plus people with rare disorders and the assessors have the same problems as other medical professionals in order to be able to assess the impact of the rare disorder on a child. The domiciliary care allowance is not based on a particular diagnosis but is based on the impact of the diagnosis. They too would benefit from a national centre for rare diseases information office. I would wholly endorse more resources going to the Genetic and Rare Disorders Organisation, GRDO, which is a voluntary organisation, as we would benefit from having somebody else to refer to.