In 2007 Sam was diagnosed with Friedreich’s Ataxia, a life changing, incurable and progressive illness. At present there are no treatments or a cure. According to the HSE Sam does not qualify for a Medical Card. He is under the care of the CRC until he reaches 18 years and then will move to the Ataxia Centre in Tallaght Hospital. As there are huge demands on the HSE and CRC resources regular physiotherapy, hydrotherapy and other therapies are not available. Sam’s family and friends decided that they were not happy to sit back and do nothing. Having researched the options it was agreed that we would establish a Special Needs Trust.
When we embarked on setting up the Public Suscription Trust for Sam, it was a minefield. We took legal advice and found that we would need two or three trustees who would look after the monies for the benefit of Sam, ensuring that the funds will be properly invested, administered and protected. The trustees cannot be ‘connected’ to the beneficiary. This kind of trust has tax benefits. It is established by a deed and must be submitted to the Inspector of Taxes for prior approval. Section 12 of the Finance Act 1999 sets out the conditions for Public Subscription Trusts.
Monies raised go towards Sam’s ongoing needs and medical expenses. Costs include one-to-one physiotherapy, hydrotherapy, anti-oxidant supplements etc.
For more information about setting up a Special Needs Trust have a look at the Revenue page here.