What is the exact title of your role?
Services Development Officer
Where do you currently work & how long have you been working there?
I started working with the wonderful team at Epilepsy Queensland in June 2017.
I am sure you have seen a great deal of change in the disability sector. What do you think is the most exciting change & why?
I think one thing to recognize and appreciate is that change is constant. I have worked in the Community Services sector for 12 years, so I have seen many changes. Ultimately, any change that enables flexible and personalized life enhancing options and opportunities for people is welcomed.
Over the years, there has been greater focus on person centred supports – ensuring that the person is at the centre of all decisions about their life; strength based methodologies – focusing on the inherent strengths of the person – and more broadly their families and community; and more recently – the principle of co-design – that is, working with people to design policies, programs and solutions that work for them. For me, these are core frameworks that guides my work.
Although there are some teething problems, the National Disability Insurance Scheme’s (NDIS) core principles about greater choice and control over the supports people with disability or functional impairment require to live the life they choose and be more connected to other people and the wider community, is exciting. Given that the NDIS is the largest social reform since Medicare, speaks volumes as to the change that is upon us.
What do you love about your job?
I am privileged that I get to work across various aspects of the job – being part of the Services team, means I get to engage with people with epilepsy, their families, service providers, workplaces etc. all at a time of need or support. Providing information, referrals, support or just being a listening ear on the other end of the phone – is very humbling.
I am also excited to be part of the team that is looking towards the future, and really getting to know what supports and services people are seeking. With the NDIS live in some regions, and on our doorstep in others, this will create opportunities for some people with epilepsy that haven’t had this before. I am able to be part of their journey from starting to consider their eligibility through to having additional supports in services available to them to use in ways that they haven’t been able to in the past. We recognize that not everyone will be eligible for the NDIS, so we are also focused on providing information and support through other pathways to meet need.
What is the most challenging part of your job?
At this point in time, epilepsy is considered by some people within the National Disability Insurance Scheme (NDIA) as a health condition, and hence, not eligible under the NDIS, as it would be the responsibility of the health sector. Whilst epilepsy does require interventions from the health sector, such as appointments with Neurologists, medication management etc.; the focus of the NDIS is on providing supports and services to people with disability or functional impairment – so we are working hard to reframe this thinking to – what is the impact that epilepsy has on the person’s life. This may be in relation to mobility, communication, social interaction, self care, self management, or learning.
Where would you most like to travel?
I have been lucky in that I have done some travel over my life, I have been to the UK, Fiji, Vanuatu and quite a few road trips to Victoria, where I was born. Whilst, I would love to go back to Ireland – I just love the feel of this country; my next trip I would love to go to Japan. I have always been interested in going to places with different cultures and way of life that I have grown up with, so this is on the list.
What is your favourite food?
My background is Italian, so it would have to be anything Italian, but gnocchi is definitely a favourite.
What/who is your favourite book/author?
Quite embarrassingly, I haven’t really made enough time to read a lot of books for pleasure. However, reading the Power of One many years ago – has definitely been a stand out for me.
Who would you like to meet?
Tough call – it would have to be a toss up between the Queen and Barak Obama – both powerful leaders who have endured many difficult times, whilst having the ability to connect positively with so many people on various levels.
What genres of music do you like listening to/favourite song?
I would say my music taste is very eccentric – I love anything from Green Day, P!nk, Evanescence, The Beatles, The Carpeteners – I think it depends a lot on my mood. I am loving Post Modern JukeBox at the moment – singing mostly modern songs with a vintage filter. If you haven’t heard them, I would strongly recommend checking them out.
Do you have any interesting hobbies you would like to tell us about?
In addition to a social netball team that I am part of and loving, the other hobby I like to do with my husband is visit Antique Centres, or garage sales – with my mum. I love old antiques, and pondering what history or story is behind the piece. We also had a classic 1950’s wedding, and were able to incorporate quite a few of our pieces in the reception centre, which was very personalized for us.
What do you feel would greatly improve epilepsy care currently in Queensland?
There are a number of things that come to mind – advancements in technology to detect, monitor and treat epilepsy, improvements in medications available to reduce negative side effects, etc., however, perhaps one of the most powerful ways to improve the care and support to people with epilepsy is to raise awareness and understanding of the condition, and truly ‘help bring Epilepsy out of the Shadows.
Leonie is available for appointments over the phone or in person (depending on location) to speak about the NDIS and epilepsy. Contact Leonie Hogarth on firstname.lastname@example.org or 1300 852 853.