The point is that the children going to the UK for trials encounter many challenges and this is not acceptable on an ongoing basis. There are three key areas: research, a proper register and standards of care. Duchenne Ireland contends that only a fraction of boys with the condition are on the register. What is a needed is a dedicated neurologist to drive the updating of the register and to establish the standards. The Lancet journal will next January or February list a register of standards for all countries with regard to the research and trials that have been carried out. This register is what will form opinion. GlaxoSmithKline has already signed a deal to put a product on the market.
If we do not have a proper register for the children of this country, they will miss out. It is estimated there is a core of 150 to 200 boys with the condition. I ask the Minister in the first instance to dedicate a neurologist from within the current core staff of the HSE to drive this forward.
Following on from the Report Stage debate on NAMA and previous discussions in regard to NAMA master and minor SPVs – I am not quite sure how many SPVs there are – and the rounds of the earth to which the Government has gone to facilitate the banks and large developers, it is difficult for ordinary people and families experiencing serious financial challenges to understand why they are being left to go to MABs, which neither has the resources – there is a waiting list of some months for its service – nor the statutory authority to negotiate deferred payments on behalf of individuals. It is difficult when one meets people on the street to defend an opinion that the more one owes the more protected one is and that the person who owes only a mortgage is at the mercy of the banks without any protection.
While I commend the Labour Party on its motion, the Fine Gael proposal to protect homeowners reflects the obligation of the banks to acknowledge that during the so-called boom years they loaned money recklessly, providing 100% mortgages over 30 years and more often than not with a current account which ensured people would be in a position to make interest-only payments and would never or, at least for some considerable time, be able to reduce the capital amount of the loan. This happened in the good times. Now, people who are losing their jobs, paying extra levies and tax, taking reductions in pay are struggling and being criminalised. The housing agency, Respond, estimates that the number of people in this position is 25,000 although the figure varies and is often quoted as 35,000. The Government, however, says the true figure is less than that. Nevertheless, it is possibly a figure that is increasing all the time as unemployment and other factors kick in.
The Fine Gael proposal is that NAMA would take an equity share following a suitable write-down in the mortgage to reflect the reckless manner in which the mortgage was given. The reality is first-time buyers who purchased a home between 2002 and 2008, when property prices were falsely inflated, are caught in a spike. These are the people who as a cohort are more than likely, if the two parents are working, to have children in child care and who, if not working, had extended themselves and are now under severe pressure. These people must be protected. The six month code which comes into effect when people fall into arrears is no good because they will not be able to get out of the mess in such a short period.
The moratorium, worthy and all that it is, only defers payments. The proposed homeowners protection element of our amendment to the NAMA legislation would allow homeownes to opt to continue to make payments at a level they can afford, for NAMA to take an equity share in the remainder and allow the homeowners, if they return to an income level which would allow them pay the full amount, to repay NAMA. Also, in the event that the property is sold NAMA would realise its share if a profit is made. This appears to be an equitable proposal.
The Government appears to have buried its head a little, given that its amendment commends the Government on its actions to stabilise the financial system and to restore the public finances thereby protecting jobs and home ownership, which is very laudable. However, yesterday there were fluctuations in the financial institutions’ stock value. One cannot state that the actions taken have stabilised anything at this stage. I urge the Government to rethink the issue and to take on board both proposals put forward.