Turning Billy’s life around with a fresh approach

What a difference four months can make!

It certainly been a remarkable journey for Billy. Before coming to Hearth, there were plenty of things Billy wanted to achieve but just wasn’t getting there. Today he rides escalators and lifts, plays sport and volunteers at an Op Shop.

For many years, Billy’s mother Lauren knew deep down that he could reach his goals. She says the supports he was receiving were not quite helping him get there.

“Billy was attending his day program in a centre Monday to Friday. But it was no longer meeting his needs, Lauren said.

Billy’s situation is faced by many around the country. Daily, hundreds of Australian adults with a disability attend day centres where they are supported in groups, participating in various group activities. 

Over decades, this has been the only option for adults during the day who are not able to engage in meaningful work because their disability.

But it has not been the ideal solution for some as the group activities have not necessarily maximised or enhanced their independence or integration into the community. In this setting, the goals are more group based and not individualised.

A chance to explore offers new horizons

For Billy, it was a big life change which presented fresh opportunities. He and his mum relocated to Brunswick and the search began for new support options. They soon heard about Hearth.

 “Billy was still on the state government’s Individual Support Package (ISP) and we waiting for our National Disability Insurance Scheme (NDIS) meeting,” Lauren said.

“I knew what we needed was support that was different from the past. So, when I called Hearth I asked for one-on- one support. I wanted Billy much more integrated into our community.”

For the Hearth team, the request was unique. Meeting Billy’s needs would mean bringing together different elements of support. This required special consideration.

When partnership is critical

Justin Scanlon says the early conversations he had with Lauren were very important.

“Lauren and I spoke a number of times over the phone. In complex cases and all cases really, the partnership with the guardians is critically important.”

“The process is never perfect and requires ‘give’ ongoing, on both sides to make it work,” he said.

Lauren eventually talked Justin into meeting her and Billy in Brunswick.

“This was serious point for us. Visiting the client at home is an important step to truly starting to understand the circumstances and the supports needed.”

Justin’s son has Cerebral Palsy and he can relate to experiences of parents caring for their children. Even then, he found himself moved by Lauren being host, mother and advocate during the meeting in Brunswick.

“It was the 28thMarch and I remember it clearly.  Rashmika, Billy’s Relationship Manager and I visited Billy and Lauren at home. Billy did not sit still at all and continued to pace the length of the second story. Lauren was constantly prompting, coaching and directing Billy.

“I was amazed by how Lauren managed this while engaging with us. It reminded me of being out with my son, when you can never switch off and be simply consumed in the moment”, he said.

By the end of the visit, a new partnership was forged. Hearth would support Billy. There were many goals to work at. But the next step was critical – finding the right support workers.

Jakub and Team Billy

From the very start, it was decided that building Billy’s support worker team would be a considered process with targeted recruitment of the team. First, a leader  was needed who would guide Billy’s team. One person already on board stood out– Jakub!

Jakub had come to Hearth through a general recruitment process. He had very quickly made a strong impression with his overseas experience and real passion to make a difference.

Justin recalls, “Once he started working with Billy, Jakub’s patience, skills and experience meant he was an obvious choice as team leader.”

At Hearth, the leader in a complex situation like this plays a key role in inducting others into the team through shadow training. The additional responsibilities are reflected in remuneration.

“We were just fortunate to find Jakub,” Justin says.

“We then built the rest of the team through targeted recruitment, matched with Billy’s needs.  It was important that we found people with the right experience.”

Design and action: Billy’s masterplan

Di Gow and team ensuring structure with flexibility

Once the team was in place the focus turned to one of the most important tasks ahead. It involved designing the plan which would allow Billy to participate in activities important to achieving his goals. For the team at Hearth, it was time to bring in the experts.

“We partnered with consultant Di Gow from “Planning Great Futures” to facilitate Billy’s plan. It involved translating Billy’s stated goals into activities for the support worker team to action,” Justin said.

“When you have a complex case such as Billy’s, you do have to engage the right team, including experts or specialists.”

Billy’s Allied Health Team from Abacus Learning Centre as well as his new Hearth team also provided input which was integral to the design of his detailed support plan.

As the plan was put to action, conversations between everyone involved in supporting Billy daily moved to a digital App. This special App used at Hearth allows daily monitoring of progress and ensures that supports are always directed at the achievement of goals in individual plans.

And so began Billy’s new journey!

Navigating progress with gentle perseverance

Over the next few months, there were many learnings for all involved. It was important to keep track of the steps taken. Those who knew Billy well also provided the support team invaluable guidance.

Justin Scanlon says it was important for everyone to be patient and not raise expectations too early.

“We know that issues will arise and there a number of challenges along the way that have tested the support workers,” Justin said.

“But this is where the life experience and support worker experience has really assisted. And of course the concept of partnership with the family has been strong.

“It’s alwaysgrounded on everyone wanting the best for Billy.

Experiencing real change  

After months of working together, persistence started to pay off for Billy. One of the exciting early gains was Billy’s newfound independence using an escalator and elevator. It took at least two hours of repeated attempts.

But Billy’s mother Lauren said the outcome was worth every minute of persistence by the support workers.

“It was a key step forward for Billy.”

For the Hearth support team, insights from Billy’s Allied Health team during weekly visits have been critical, especially those involving some complex challenges Billy faced.

“Billy is non-verbal. So, the support workers have been teaching him to identify his body parts using his communication device. This is very useful when Billy needs to tell the Hearth support team when and where he is in pain,” explains Justin.

The support team has also focussed on a range of new life skills to enable better socialisation and integration in the community. These include sitting down to eat meals and in public, refraining from taking food and drink belonging to others. Billy has also learned to follow instructions and control impulsive behaviours while shopping.

Billy at the Op Shop where he works

But it’s Billy progress at activities involving teamwork which has been the most promising and significant. He works at the popular St Laurence Op Shop in Brunswick where, like many retail assistants, he re-racks clothes during his shift. When he first started working there, it took some effort to keep Billy engaged with the tasks at hand. Now, after some effort with his support workers, Billy can now focus on 30 minutes continuous re-racking at the Op Shop.

Billy’s mother Lauren is very pleased that this staying power and growing ability to focus for longer periods is now extending to other areas as well.

“Billy’s actually spending more and more time now at the ‘Helping Hoops’ basketball program he attends. It’s great for skills building, socialising and just being active. He now stays for over an hour at the sessions,” she said.

Billy’s passion for the outdoors

Billy taking in the Victorian outdoors

Like many of us, Billy also loves spending time away from the bustle of the city. Lauren says with individualised support, he now enjoys even more of the outdoors he loves.

“He just really enjoys riding in the car and heading off on long bushwalks and hiking. This is making a big difference to Billy’s wellbeing.”

The importance of meaningful activities with focussed support

When the NDIS was established in 2013, the improvements in the quality of life Billy and Lauren are experiencing today were exactly what the experts and governments had in mind. An all-important Australian Productivity Commission Report had highlighted the positive impact community participation would have on the well-being of people with a disability and their carers.

Justin Scanlon strongly believes that for real improvements in quality of life, it is essential that the engagement in activities are meaningful and purposeful.

“We know that attending a day program did not provide Billy with the opportunity to engage in activities that were meaningful to him. It’s because Billy remained in an environment which focusses on group rather than individual goals,” he said.

“This meant that Billy was never in a position to test his boundaries, try new activities and grow his skills. The Hearth team perseveres with these because we know he can grow. And having a team of  support workers who know him and care also allows Billy to push beyond his comfort zone.”

Lauren is very pleased one-on-one support has enabled and emboldened Billy to venture into new experiences.“He is seeing different parks and beaches, trying new activities and really just getting out and about at his own pace,” she said.

Justin Scanlon says with individualised support, each step and outcome can be followed more closely.

“The beauty of one-on-one support is that Billy’s Hearth support team can focus on one skill at a time.  There is no need to look at how the rest of a group is doing,” said. “So we only focus on Billy. Overall I believe that he has been able to establish a much higher level of meaning and purpose in his life.

“He now has choice and control over what he does.”

Hearth finds a champion

While Billy has made incredible progress in four months, the experience has also made a big difference at Hearth.

“Billy’s dad, Michael has now taken on the guidance and support of Billy’s team. The transition from Lauren has been seamless and this really reinforces the importance of the partnership with the family,” Justin Scanlon said.

“The fact is, we have learnt a lot through working with Billy.”

“Importantly, we have now been able to apply the many learnings to making a difference to other participants looking to Hearth for extensive one-to-one support throughout the week.

“So while we’ve been behind Billy throughout this journey, he’s really come through as a real champion – setting quite an example for all of us.”

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