Reference no: EM133544202
In the early 90s, newlyweds Dorcia and Barry were raising their beautiful two-year-old daughter, Samantha, and were expecting their second child - a son! They were ecstatic. But in one night, those dreams were tragically ripped away...
Dorcia checked on five-month-old James as he slept and found him completely blue and unable to breathe.
"He went into intensive care and I had him baptised in the hospital because I thought I was going to lose him." Dorcia said.
James was in hospital for weeks before being diagnosed with cerebral palsy, quadriplegia, epilepsy, muscular dystrophy, brain damage and blindness. Dorcia, Barry and Samantha faced an incredibly tough time adjusting to their new reality of living with a family member with severe disabilities.
"I don't think you do cope right away... I didn't know what to do,"Barry said.
"We just took it one day at a time and gradually you adjust to it, to an extent."
"We had to get lots of home alterations and do a lot of learning because we now had a child we had to monitor 24/7." Dorcia said.
Now, as a 29-year-old, James still requires 24-hour care and needs assistance with all daily activities including being turned in bed throughout the night to avoid choking.
He is non-verbal, wheelchair-bound and fed through a tube to his stomach. Dorcia and Barry understandably became incredibly protective of James and, like any parents, only wanted the best for their son, so they took responsibility for James's care while they both continued to work full-time.
"My job became my hobby because I could go and switch off, then I'd come home and be back on," Dorcia said.
When James was 21, Dorcia and Barry came to the harsh realisation that they could no longer physically take care of James. This is a common fear among parents who care for a child with disabilities, as they get older and are no longer able to provide the same level of care they once could, but don't want to risk their child having to end up living somewhere unsuitable for their needs, like aged care.
"Seeing young people in aged care is distressing because it's no place for them," Dorcia said.
Samantha applauds her parents for making the incredibly difficult choice for James to move out of the family home.
"There most definitely were hesitations... but it was the right decision," Samantha said.
"James is a dead weight when you hold him and Dad is strong, but ageing as well, and Mum's quite small, so she physically couldn't lift him, so it was falling a lot to Dad and that in itself created stress amongst the family, both physical and emotional."
The family was lucky to find a Supported Independent Living home nearby for James, although it was in a less-than-desirable neighbourhood, with no footpaths and limited wheelchair-accessible activities nearby.
James had three housemates much older than himself, with one well into his 80s. Due to his lack of vision, James is passionate about music and loud noise, which the older housemates did not appreciate. He had no choice of care provider, and the home was simply not meeting his needs.
"He was being forced into bed at 7pm, despite like any other young man his age, wanting to stay up until 10pm at least!" Samantha said. "If Dad wanted to stay the night, he wasn't permitted to stay in the same room as James."
"We were getting to a point where we thought nothing was going to change, and unless we pushed James to another place, he would stay there forever." Samantha said.
"Barry came home one day and said James was sitting in a dark room, curtains drawn, in front of a TV with nothing on the screen and no music, just slouched on his wheelchair- those are things that scare the hell out of me." Dorcia said.
The entire family spent seven painful years witnessing James failing to thrive, after what was meant to be a life-improving decision for everyone. Then, Dorcia heard about Youngcare's Specialist Disability Accommodation (SDA) homes that support young people with high physical support needs and their families to live their lives however they choose, with more dignity, independence and freedom.
The family made the incredibly brave decision to reach out to the Youngcare Connect team and were overjoyed when James was accepted into Youngcare's new two-bedroom SDA apartments in North Lakes. He was even matched with a housemate who also loved music and noise as much as he did!
"They bounce off each other," Dorcia said. "James loves the noises his housemate Christopher makes and he laughs. It was the hardest thing we've ever done, but I would never take James away from here- this is his forever home."
"James is happier, he has a flatmate his own age to muck around with and he's got some amazing carers that look after him."Samantha said Youngcare has helped her family feel more at ease.
"There's reassurance he's cared for moving forward, for years to come."
"We are just one family whom Youngcare's support has benefited."
"The individuals who typically go into this housing don't have freedom of choice in so many respects because of their disability and their challenges, so for funds to go towards something so big that means so much to them, a place to live... a basic thing, it makes a world of difference.
"These are the freedoms most of us take for granted... the least we can do is offer them this."
1. Discuss the suitability of the out of home care environment in the community where James was first living. Relate this information to the International Classification of Functioning Disability and Health (ICF) and James' level of activity, participation, and overall health.
2. Discuss strategies for health professionals that promote shared decision making in collaboration with carers, families, and individuals. Relate these strategies to James. around
3. Discuss the key elements of person-centred care and outline the benefits for people with chronic conditions or persons with a disability. Support your discussion with evidenced based research literature. Related this information to James.