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.

Using the marking criteria and supporting academic references address the following. 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. (20 marks) Discuss strategies for health professionals that promote shared decision making in collaboration with carers, families, andindividuals. Relate these strategies to James. (30 marks) 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. (30 marks) The purpose of this assessment is to enable students to meet the following subject learning outcomes. – Recommend strategies that promote a shared decision-making process in collaboration with carers, families, and individuals living with a chronic condition or disability. – Develop evidence-based rationales for safe, person-centred care of people with chronic conditions or persons with a disability.   Language Use  Sentences are well constructed, expression and meaning are clear, basic written language rules are followed.  Referencing and in-text citations.   The APA (7th) r eferencing style is used correctly for both in-text citations and reference list.  – Academic references include journal articles, textbooks, and reports. Can i please get minimum of 8 referencing and intext citation.   -High quality academic references are current (within 5 years) and specifically relevant to the case study.  – Evidenced based research literature – research findings published in peer-reviewed journals relevant to the case study topic. explain each question in more brief

ANSWER

Suitability of the Out of Home Care Environment for James

The out-of-home care environment where James initially lived, characterized by a Supported Independent Living home in a less-than-desirable neighborhood with limited accessibility and mismatched housemates, was not suitable for his complex needs and preferences. The International Classification of Functioning, Disability and Health (ICF) provides a framework to understand the interplay between health conditions and environmental factors on an individual’s activity, participation, and overall health.

James, with cerebral palsy, quadriplegia, epilepsy, muscular dystrophy, brain damage, and blindness, faced significant challenges in mobility, communication, and sensory engagement. The environment lacked appropriate wheelchair accessibility, wheelchair-accessible activities, and an understanding of his passion for music and noise due to his lack of vision. This mismatch between his environmental demands and his abilities restricted his activity and participation. Moreover, the lack of age-appropriate companionship and the inability to choose his care provider further limited his participation and well-being.

Strategies for Health Professionals Promoting Shared Decision Making

To promote shared decision making in collaboration with carers, families, and individuals like James, health professionals can implement the following strategies:

Holistic Assessment: Conduct comprehensive assessments considering medical, psychological, social, and environmental factors to understand the individual’s needs, preferences, and strengths.

Effective Communication: Facilitate open and clear communication with all stakeholders, ensuring that information is shared transparently and in accessible formats.

Person-Centered Care Plans: Develop care plans tailored to the individual’s preferences and needs, involving them, their family, and carers in the decision-making process.

Education: Provide information about available care options, services, and interventions, allowing informed choices that align with the person’s goals.

Respect for Autonomy: Respect the person’s autonomy and decision-making capacity, allowing them to voice their preferences and concerns.

Regular Review:Continuously assess the effectiveness of care plans, seeking feedback from all stakeholders and adjusting approaches as needed.

Key Elements of Person-Centered Care and Benefits

Person-centered care is a holistic approach that prioritizes the individual’s preferences, needs, and values. For people with chronic conditions or disabilities like James, person-centered care offers numerous benefits:

Individual Empowerment: Person-centered care empowers individuals to actively participate in their care decisions, fostering a sense of control and autonomy.

Tailored Care Plans: Care plans are customized to the individual’s unique needs, preferences, and circumstances, leading to more effective interventions.

Enhanced Quality of Life: By considering the individual’s goals, person-centered care promotes emotional well-being, self-esteem, and a higher overall quality of life.

Improved Health Outcomes: Individuals are more likely to adhere to treatments and interventions that align with their values, leading to improved health outcomes.

Collaborative Partnerships: Person-centered care fosters collaborative partnerships among health professionals, individuals, families, and carers, resulting in more comprehensive and effective care.

Reduced Healthcare Disparities: This approach reduces healthcare disparities by addressing the unique needs of each individual, regardless of their condition.

Conclusion

James’ experience highlights the importance of a suitable environment, shared decision making, and person-centered care for individuals with disabilities. The inadequacy of the initial out-of-home care environment in accommodating his needs and preferences underscores the significance of aligning the environment with an individual’s abilities. Strategies such as holistic assessment, effective communication, and tailored care plans are vital for promoting shared decision making in collaboration with all stakeholders. Person-centered care, driven by individual empowerment and customized interventions, offers substantial benefits for people with chronic conditions or disabilities, enhancing their overall well-being and quality of life.