John Dolan (Independent) | Oireachtas source

Ireland's opting into the EU reception directive should be broadly welcomed for two reasons. The first is the directive addresses the right to work for asylum seekers, which the recent Supreme Court judgment stated clearly the State must do. Second, it explicitly requires the State to ensure that the best interests of children are considered in all decisions relating to their asylum application as well as their general well-being and development, as is now the case in much other Irish law. However, direct provision remains an anarchic system of institutionalisation and marginalisation of asylum seekers that should be completely abolished.I have a strong understanding of this through working with people with disabilities. We are struggling very hard to make sure people with disabilities do not go into institutions.

Listening to "Morning Ireland" earlier today, I heard an Irish family member speak of the devastation Huntington's disease has brought to her family over the past 25 years through its effect on her husband through the slow and heartbreaking loss of his ability to walk, to talk and to think. One of her children is positive for the condition as well, and she has the same fate ahead of her. This does not just affect the individual. It is hereditary. They, and all of the other 750 affected families affected, are desperate for a therapy to stop this disease from taking hold. They are looking for the straw of hope for the first time. Yesterday, the success of the first human trial of a Huntington's-lowering drug was announced. Ionis-HTTRx lowers the harmful huntingtin protein in the nervous system. This trial will move into the next phase, available to a much larger group of patients. The question is how Irish folk who have or will have this condition can access this opportunity, which is an opportunity of hope. The Huntington's Disease Association of Ireland is calling for vital Huntington's disease specialist services to be available here in Ireland in order that patients devastated by what I can only describe as the cruellest of cruel illnesses can be part of this potentially life-saving clinical trial.

We are all aware of the need for improved resourcing and development of neurological services in general. There is actually not one nurse specialist here in Ireland to deal with this cohort or to give them some support. To put that in perspective, in Northern Ireland there are two to fill that post, and we wish them well with that. I am asking the Leader to make his best efforts, as I am sure he will, to request that the Minister for Health would do everything possible to make sure that along with people from North America and across Europe, people here in Ireland have access to these trials. I cannot overemphasise the fact that this is the first moment that these people will have some hope of avoiding 20 to 25 years of a devastating condition.