Belinda O’Brien is a witty, happy and talented young woman who loves to paint, socialise with friends and attend her nephew’s football games every Sunday. She – like all young Australians with high care needs, deserves to live a life of choice, independence and dignity.
Belinda has a combination of high care need that makes tailoring her accommodation to her needs, crucial in providing the quality of life she deserves. Since the passing of Belinda’s mother, her father Pat has been Belinda’s soul carer for the past six years. Unfortunately, there are many families in Australia, just like Pat and Belinda, who are struggling to keep their loved ones at home and fighting for necessary home modifications to avoid having to put their loved ones into places such as aged care.
In Belinda and Pat’s case, it was the bathroom that was causing them the most daily stress. Their bathroom was fitted with slippery tiles and no toilet. With Belinda’s Cerebral Palsy and seizures it was simply unsafe for her to use the bathroom by herself.
“From the hallway you could access the bathroom from her bedroom but it had no toilet in there, it just had a vanity a bathtub and a shower. So at night, for her to access the toilet she would have to go through the two bathroom doors and then into the hallway and then a third door to get to the toilet.” – Pat
Pat installed an alarm system next to Belinda’s pillow so that when she needs to use the bathroom, which normally occurred twice throughout the night, Pat would be able to assist her. Not only did this cause sleepless nights for both of them but also took away something that Belinda treasured most; her independence.
The danger then became all too real for Belinda when she slipped in the bathroom and was rushed to hospital. To make matters worse, the worry and stress became too much for Pat, who suffered a heart attack and needed emergency open heart surgery. Pat was beside himself and in a world of pain at the thought of no longer being able to care for his daughter in their own home. With no guarantees from the NDIS, desperate and needing funding immediately, they looked to Youngcare’s Grants program for help and were successful in their application.
“We were both quite emotional on the day when we got the grant because we realised it was a significant thing in our lives.” – Pat
The funding allowed for the much-needed modifications to be carried out, including a toilet to finally be installed, the bathtub removed and the tiles replaced with a non-slip surface along with other features that give Belinda the confidence and independence to go to the bathroom whenever she chooses. These simple changes alleviated Pat’s fears of Belinda having to move out of the family home. The thought of not always being able to look after his daughter and the possibility of watching Belinda be relocated to a care facility was something that Pat could not face, especially after the loss of his wife – but now, this is no longer a reality that they have to face. Because of the Youngcare grant, Pat has been able to ensure that now, and in the future, Belinda has the freedom to choose where she lives, who she lives with and how she lives her life.
“Belinda would always say to me and her mum, ‘I just hope I can live in my own home’. So that was a long term plan to eventually put our last home into a trust for her. We’d set it up so that it could be her home and she could have a choice of who lived with her, what staff goes into the house and cares for her, you don’t get that choice in a supported house kind of model. The best way for Belinda to actually enjoy her life is to be able to live in her own home.” – Pat