“Multicap inherited a broken, traumatised Tommy – now look at him; he’s smiling and getting out patting cows.”
These are the words of Una, mother to 21-year-old Tommy, who less than two years ago was facing a very uncertain future.
But today, thanks to the endless advocacy of his parents, the expertise of Multicap’s Critical Support Services and Positive Behaviour Support teams, and the support of Queensland Health, Tommy’s life is unrecognisable.
Diagnosed at a young age with severe autism and obsessive-compulsive disorder, Tommy’s needs became so complex by the age of 16, that his adoring parents could no longer support him at home.
Tommy’s self-harming behaviours such as banging his head up to 60 times a day, gradually resulting in two large wounds on his head and into his skull, which over time became infected (a condition known as osteomyelitis). Along with harming himself, Tommy would at times harm others. He was in need of specialist support, 24 hours a day.
His parents, Una and Ken, spent the next three years advocating for their son and navigating the system as best they could, trying to find the right care, support and a stable environment for him to live.
Tommy was in and out of care from service providers and hospitals. Eventually his life was restricted to the four walls of a hospital room to protect himself and others.
In 2021, Queensland Health contacted Multicap and the Critical Support Services and Positive Behaviour Support teams stepped in.
Critical Support Services Regional Manager Charles Holzheimer said the team built rapport with Tommy as he slowly became familiar with them over a number of months.
“Based on what we knew about Tommy, and informed by a team of clinical specialists, a gradual and phased approach was taken to supporting Tommy,” Charles said. “At first our team was just observing Tommy, and then this built up to saying hello and goodbye. This progressed to singing songs and reading books to Tommy and then just sitting with him.”
As Tommy got to know and build trust with his team of disability support workers, the Critical Support Services team consulted with Multicap’s Behaviour Support team around Tommy’s needs and reasons for his behaviours.
“Through their observations, the behaviour support team has been able to connect certain behaviours with meanings, such as Tommy being in pain,” Charles said. “So, we are now able to better understand the behaviour and respond appropriately.”
A network of community health professionals was also established to care for Tommy’s medical needs including a general practitioner, gastroenterologist, pain specialist, infectious disease specialist and registered nurse.
When Tommy was ready for discharge into one of Multicap’s emergency accommodation homes, an entire care plan had been developed that included three to one support by comprehensively trained staff, regular nursing visits to dress the wounds on his head and a medical team to call on when needed.
To minimise the change in location and routine, the emergency accommodation was initially re-arranged to mirror the hospital environment Tommy had become used to.
A sensory occupational therapist spent time with Tommy and developed a plan to help him build new life skills and a plan for staff to support Tommy, who has limited communication skills, to build expressive capabilities.
Eighteen months after discharge from hospital and Tommy is a different person. He has stopped banging his head, he is learning new skills around the house including helping in the kitchen, making smoothies, doing his laundry, and engaging in art and crafts. He is also learning to cross the road safely, a priority for Tommy’s parents.
Tommy is doing so well that the team is now able to take him out every day to the park, the beach, shopping, farm visits to see cows and horses, and even a food festival without harming himself or others.
“We make sure Tommy has a number of choices each day,” Charles said.
His love of water has been reignited with regular swimming in Multicap’s hydrotherapy pool and he even surprised his mum with a visit home on Mother’s Day.
“These were two major milestones for Tommy, and we’ve been able to support him to achieve this through our fantastic team of excellent supports and evidence-based, best practice,” Charles said.
Multicap has committed to building a purpose-built home for Tommy to live in long term.
Meantime, Tommy’s parents get to spend quality time with their son as ‘mum and dad’ at his temporary Multicap home, even taking the family dog to visit.
“Tommy’s parents now have a son who’s getting out every day, loving life, improving his quality of life, and they are parents who can now just be parents,” Charles said. “They come and see him every single week, hang out and just be with their son, no longer needing to battle the system.”
Tommy’s parents said they now feel supported.
“We had become accustomed to the idea that people would describe Tommy as a security risk, hard work or scary on paper,” they said. “But now he’s resilient, supported, happy natured, well-loved and has beautiful skills”.
“We were alone, now we’re supported, just able to be mum and dad.”