Chris Hayes (Fowler, Australian Labor Party) Share this | Hansard source

I seek leave to make an additional contribution.

Leave granted.

As I was saying, it is very rare for children to have Phelan McDermid Syndrome. It has a significance in terms of delayed developmental stages in a child and the absence of language skills but also feeding and growing difficulties, sleep disturbances and intellectual disabilities. Therefore, parents with a child with Phelan McDermid Syndrome need to pay regular visits to paediatricians such as Rick Dunstan—a good friend who is Olivia's treating physician—but also to access various medications. This is where I talk about falling through the cracks. The applications of these therapies and medicines certainly are not cheap on families. Unfortunately, because Olivia is the only sufferer of Phelan McDermid Syndrome in Australia who is not diagnosed on the autism spectrum, her parents are the only parents of a Phelan McDermid sufferer who do not get the benefit of the early intervention facilities and finances available through the Commonwealth. It does not mean that their costs are any cheaper, it does not mean that their visits to the paediatrician are any fewer. It does mean that the difficulties are very much shouldered by them as the parents.

As I say, this is a very rare disease. There are only 30 known sufferers in Australia at the moment and of those children, imagine Megan's surprise to find that there was another child only recently diagnosed at age 3 living in the same postcode also suffering from Phelan McDermid Syndrome. But in his case he is diagnosed on the autism spectrum as well.

Megan has taken upon herself to meet with every family affected by Phelan McDermid Syndrome and understands that these families, like her and Andrew, are also going through some very tough times in coming to terms with the syndrome and with the impact on their child, but also with the significant medical expenses involved. DisabilityCare Australia and the National Disability Insurance Scheme will hopefully provide much-needed assistance and support to these families to enhance the quality of life and to increase the economic and social participation for all people with disabilities including young people as they grow up, like Olivia. However, there remains a significant level of unmet demand for disability services and, unfortunately, Phelan McDermid Syndrome falls through the cracks and currently there is no recognisable government assistance available for these families or their carers.

As you know, my electorate is the second most disadvantaged electorate in the country. Probably because of that and the lower land values there, my electorate is overrepresented by people and family living with disabilities. I have had a long association with various groups that offer relief and support for families dealing with disabilities and, like them, I have expressed my concern on this matter before the House as we all believe in the need for greater support and care for these families.

I have nothing but admiration for the courage and determination of Megan and Andrew. What they are doing not only to support their beautiful daughter, Olivia, but also what they are doing as the advocates of Phelan McDermid Syndrome throughout Australia is absolutely commendable. I commend this to the House.

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