Improving the future for muscular dystrophy sufferers
Philip Hojgaard-Olsen, 19, of Umina, suffers from Duchenne muscular dystrophy.
Rather than succumb to the condition, Philip has chosen to improve the future for others similarly afflicted.
"It is the things you don't do that you will regret the most," is Philip's motto and his father, Mr Peter Hojgaard, said his son could be described as a "turbot with a joy stick".
At birth, Philip was a healthy, bouncy baby but, by three, he had been diagnosed with the disease and by high-school age he was unable to walk.
Now Philip has finished high school, his family has decided to move to Umina as the Central Coast is one of the areas in Australia to have early access to the National Disability Insurance Scheme.
"Last year I graduated from high school and will be attending Macquarie University next year studying games design and development," the young Mr Hojgaard-Olsen said.
"I have an interest and passion for IT and enjoy gaming.
"I'm also interested in drama and media and have enjoyed being part of creating a short five-minute documentary for Muscular Dystrophy NSW Duke of Edinburgh Program."
Philip's list of his life accomplishments is extensive including: sailing independently using a joystick and receiving an award for Sailor of the Year (2013); helping to get GoGet vehicles converted for wheelchair transportation at an affordable price; volunteering at the Peninsula Village Nursing Home; and volunteering at Fighting Chance to set up support systems.
Philip travelled to Denmark in 2015 for three weeks to investigate living options for people with disabilities and presented the findings at the Neuromuscular Conference in 2016.
Philip was recently guest speaker at the Rotary Club of Umina Beach.
"I have completed my bronze and silver Duke of Edinburgh and am currently working on my gold.
"My father and I are currently working with some universities in Sydney in order to develop prototype housing constructed for students with disabilities on University campuses.
"Called Integrated Community Living, this is a project that I am committed to and will be, for me, an important legacy.
"Duchenne Muscular Dystrophy is a condition which causes muscle weakness," Philip said.
"It starts in childhood and may be noticed when a child has difficulty standing up, climbing or running.
"It is a genetic condition and can be inherited.
"It affects only boys, although girls may carry the gene.
"Boys with Duchenne have regular check-ups and physiotherapy from childhood.
"As a result, I use an electric wheelchair that has a stand-up function in order to help cater for my weak strength and brittle bones.
"I now require assistance with my 'activities of daily living' and of course assistance getting anywhere that my electric wheelchair cannot take me.
"I am very active and have ongoing plans and projects in the community with many achievements and skills under my belt."
Philip and his family are currently raising funds so he can travel to Denmark for six months to attend Egmont Folk High School.
"To make this trip possible, a total figure of $15,000 is needed."
Philip has set up a fund raising page at https://chuffed.org/project/making-a-difference-for-people-with-disabilities.
"While I was fortunate to visit Denmark in 2015 and learned much about their highly successful approach to disability services, I really only scratched the surface of my research on that short trip," he said.
He has three goals for his 2017 trip: to learn about and bring back know-how for innovative fundraising to Muscular Dystrophy NSW; to advance his Integrated Community Living project in Australia; and to create better NDIS engagement for young people.
"I am committed in helping MDNSW overcome the funding challenges that are a result of government block-funding reduction as part of the NDIS roll-out.
"To meet this challenge MDNSW will need to generate alternative funding and focus on the services provided to maximise the direct support offered to people living with Muscular Dystrophy.
"Muscular Dystrophy Denmark (Muskelsvindfonden) raises more than $6 million every year, which is huge bearing in mind that there are seven million people in NSW and only five million in Denmark, through very specific and unique fundraising initiatives.
"I plan to investigate how Muskelsvindfonden's goes about its highly successful, unique public fundraising.
"During our 2015 visit to Denmark, we were also able to experience their folk high schools by visiting Egmont where we stayed on the grounds.
"This school is highly integrated with students with and without disabilities attending and supporting each other.
"I have now been accepted by Egmont to attend the school in the second half of 2017.
"By attending this folk high school for an entire semester in 2017, I will have the opportunity to learn new life-skills, and of course improve my Danish.
"But primarily, by attending, I will have the opportunity to investigate a successful system of integrated living and bring back useful information to will help my dad and myself in our mission of improving Australia's disability support and developing the first integrated living prototype in Australia.
"In relation to the NDIS roll-out, the individual focus and ability is core in successful implementation.
"At Egmont folk high school, people with a form of disability are very self-motivated and have clarity about their needs and desires.
"And in Denmark, 32 disability organisations are housed in the same building to secure optimal source of advice for people with a disabilities and to the government when making strategic funding decision for these young people.
"I would like to explore how Australia can learn from this structure and these young individuals in Denmark about how we can better inform young Australians with a disability to obtain the best/right services while also keeping optimal value for money.
"I am passionate about this and would like to become an ambassador for people with a disability in Australia in terms of how to get the best value out of the NDIS in order to achieve your purpose and goals.
"I am also very interested to learn how and why Denmark is known as the world's happiest nation and learn why Danish people with disabilities are more motivated and able to see their own path and make important decisions about their needs.
"I hope to understand what makes a difference in their day to day lives and how Australia can learn what is needed to make people with disabilities more ambitious about finding their own purpose, making goals and finding future careers that contribute to society and give meaning to their own lives."
SOURCES;
Interview, 6 Jun 2017
Peter Hojgaard-Olsen, Umina
Media statement, 7 Jun 2017
Philip Hojgaard-Olsen, Umina
Reporter: Jackie Pearson