A new pilot program in Perth is providing crucial support for families like the Malpass family, who navigate the challenges of raising children with complex medical needs. The initiative offers respite, educational resources, and community connection for parents and siblings, allowing them to take necessary breaks while ensuring their children receive appropriate care.
Marlin Malpass, an 8-year-old boy with the rare Evans syndrome, suffers from the intellectual disability, developmental delay, and hypotonia challenges. Luckily for him, he qualifies for this unique program. His medical needs are significant, and his family and members of the healthcare community must attend to his needs 24/7. The Malpass family engages in many activities aimed to give them vital emotional support and respite.
Community Support and Connection
Madison Malpass, Marlin’s mother, emphasizes the importance of having a network of parents who understand the unique challenges they face. Thanks to the pilot program, she’s learning at information sessions and workshops with other parents. As they move through these sessions together, they swap stories, create a supportive sisterhood, and learn how to cut through confusing support systems that can otherwise feel overwhelming.
“It’s always talking about what they can’t do and the goals that they haven’t reached yet,” Madison said. “You don’t often get to speak about the good things that they can do and what makes you proud … that was actually beautiful.” These conversations build community among parents who feel like they are often alone in their battles.
Marlin’s $40,000 of care from Arlo and Bohdi Marlin’s $40,000 Marlin’s siblings, Arlo and Bohdi, help take care Marlin, too. They are recognized as sibling carers, taking part in activities with Marlin to interact with trained carers from Hannah’s House. This set-up benefits Marlin as well as his siblings, who are able to connect with Marlin in meaningful ways and help him develop important skills.
A Holistic Approach to Childcare
The new pilot program helps fill that gap in childcare availability for kids with disabilities. Monique Power, founder of RippleAbility, has been a key leader in this effort. After experiencing the challenges firsthand when her daughter was born with a complex medical condition, Power dedicated herself to helping other families navigate similar hurdles.
“This pilot came from a resounding theme that all of our carers came to us with,” Power explained. “Even with the childcare subsidies and supports available, there was no viable care option for them to be able to leave their child in a safe place and go forth and do the things that they had done prior to having that kid.”
Power urges society to change the perception of children with disabilities. She highlights the need for advocacy to escape the “deficit model.” “Understanding that the deficit model is the primary model in advocating in our space is important … but don’t let that define your child and the experiences that they have and the opportunities available for them,” she stated.
Overcoming Barriers
Richard Newman, Carers WA CEO, supports Power’s vision on increasing access to childcare for children with disabilities. In doing so, he captures the fatigue so many families experience as they fight a war on so many fronts each day. “Our families are so exhausted, it’s such a hidden battle; it happens in hospitals and homes, leaving our families isolated,” he noted.
Aoife Gray from Hannah’s House agrees, noting the excessive barriers these children encounter in traditional settings. “Barriers have just been created for these children in so many situations—health, education—and I think what we’re trying to demonstrate is that all those children in that room today, they don’t know any different … they’re all there just to have fun and have a good time and learn and play together,” Gray explained.
The pilot program is currently in full operation at three locations around Perth. It seeks to increase families’ access to quality childcare services tailored to their children’s individual specialized needs. As Power asserts, “Something of this nature in every early childhood education and care setting across Australia would be the dream.”
