Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I will make a few comments. Many of the witnesses spoke about data on chronic disease. We have heard at various meetings about the lack of data on disability. It is mind-boggling think how there can be any proper planning without such data. That is extremely important.

I find it unbelievable there is no diagnostic test for ME at this stage. I know people who have had ME for 20 years or more. It is amazing there is no proper diagnostic test at this stage and people are basically treated in a dismissive fashion, being told they are okay or look fine so they should go ahead and work and so on. Is much research being done on all the diseases or illnesses mentioned by the witnesses?

The cost of disability is coming up time and again and we hear it from everybody. It seems there is an assumption that people can survive on a payment of €200 per week or that they have a medical card covering GP and doctor visits, along with medication. As the witnesses pointed out, many other supports are needed, including assistive technology, physiotherapy, exercise classes or nutrition advice. None of that seems to be covered and it is not taken into account. That must be highlighted on a continuous basis to ensure it can be taken into account.

There is also bureaucracy around form filling and it affects so many people, no matter what payment people are applying for. It applies if they are applying for social housing or any sort of social welfare payment. The forms are so long and difficult and they must be put in simpler language and made easier for people to complete. They should be available in different languages to ensure that everybody can understand what they are applying for. So many people do not know what they are entitled to or what they should apply for. I spoke with a woman whose son had an intellectual disability. She did not know she could apply for the domiciliary care allowance. She had never applied for it in the full 16 years it was available. She should not have to know it and she should have been informed by the district nurse or whoever at the time that she had certain entitlements. There must be an easier way of informing people of what are their entitlements or what supports are available without somebody having to ask, look or rely on others, such as the peer support that we have heard about as being so important to direct people in a certain way and make them aware of what supports are available. That should not happen and people should be able to access all that information very easily.