My complex kid can’t access childcare. Why not, and what do I do now?
Children with disability are often woefully under supported in early childcare settings. Monique Power issues a call to arms to fix the broken system.
NAVIGATING CHILDCARE – IS COMPLICATED!
Imagine you’re on a road trip, driving a car with a faulty GPS. Every time you think you’re getting closer to your destination, the GPS reroutes you, leading you further away. This is what it feels like for many parents of children with disabilities in Australia when trying to find suitable early childhood education and care (ECEC).
THE ‘NO-THROUGH’ ROAD
The journey is filled with detours and dead ends. You may feel anxious about entrusting your child to others because the caregivers might not have the necessary skills or qualifications.
The government, the National Disability Insurance Scheme (NDIS), or other sources often provide insufficient funding to cover the necessary hours of care. Geographical location and long wait times further complicate your trip. For many, the severity of their child’s needs leaves them without any viable care options.
The Convention on the Rights of the Child promises that children and young people have the right to special education and care, so they may lead fulfilling lives. If upheld, this promise could be like finding a dependable map to guide you. Reliable, sustained, qualified, and appropriate care for children aged 0-5 with disabilities would bring profound benefits. It could alleviate relationship stress, enhance financial stability, allow for educational and employability improvements, reduce caregiver burnout, and improve overall well-being. Inclusive, adaptive, and appropriate early childcare would give your child the same opportunities their typically developing peers enjoy.
But why isn’t this the case in Australia? The GPS seems to be stuck on the wrong route due to barriers within the legislation, systems, and policies that govern how disability is perceived in ECEC settings. All care entities must comply with the Disability Discrimination Act 1992 (DDA), which ensures equal access and participation. Yet, the lack of accountability to the Disability Standards for Education 2005 leaves many families without the necessary support.
In Australia, it is mandatory for all children to start formal education by age six, including those with high support needs. While typically developing children enjoy ample community access and early opportunities for social, educational, and emotional development, children with profound disabilities often lack these privileges. They are frequently surrounded by adults who manage their medical and day-to-day needs, with fewer chances to integrate into their communities and connect with peers in supported settings. These challenges have long-term impacts on their overall quality of life.
THE WRONG ROADMAP
The NDIS was created to address these issues, but it has fallen short. The NDIS review highlighted a significant gap between mainstream and disability- specific services. Mainstream sectors began deflecting disability-related responsibilities to the NDIS, neglecting the provision of early childhood care. Families of young children with high- intensity support needs have felt the strain immensely, in many cases they have been diverted down a dead-end road, with no safe U-turn option in sight.
Without adequate, affordable, and appropriate ECEC options, families resort to sporadic, segregated systems or make enormous sacrifices. Existing support schemes, including the NDIS, the Inclusion Support Program (ISP), the Inclusion Development Fund (IDF), and In Home Care packages, have significant limitations. They often promote isolated educational options and are inadequately or inequitably funded. The NDIS focuses on clinical and therapeutic interventions for early childhood, neglecting substantial support hours for paid care options. The ISP aims to support inclusive practices but is difficult to access and insufficient for high and complex needs. In Home Care packages, while available, are isolating, have long wait times, and offer inflexible support.
FIXING THE FAULTY GPS
This fragmented, isolated, and unsustainable system of care for disabled children under school age in Australia needs reform. The solution lies in collective action and holding governments and support systems accountable. Access to care is a fundamental human right, as is meaningful engagement with educational and early intervention options.
Children with profound disabilities should not be excluded from ECEC settings, and their carers should not be marginalised.
PLOTTING A NEW COURSE
So, how do we fix this faulty GPS and find our way to the right destination? The answer is simple: we demand better.
This is a call for collective action, to hold governments, mainstream and disability supports accountable. Access to care is a fundamental and inalienable human right, as is social connection and meaningful engagement with educational/ early intervention options. Children with profound disabilities or complex needs should not be systemically excluded from ECEC settings, and carers of these children should not be forced to the fringes of their communities for the first six years of their child’s lives. There is change coming about, and your voices are crucial.
JOIN THE JOURNEY: MAKE A NEW MAP
Imagine a world where the GPS finally gets it right, leading us directly to inclusive, supportive, and well-funded care options for all children. This vision can become a reality with your advocacy and support. Get involved in the discussions, sign up to the cause, call out the challenges, and emphasise different outcomes. Your voice can secure access to the care and support your child needs.
Join the conversation, advocate for change, and demand better. It’s time to sign off Siri… we’ve got this one.
Childcare is for ALL children.
By Monique Power.
RippleAbility is a paediatric specific disability provider, helping families navigate complex systems of support and build their capacity to advocate for appropriate supports and services for their child. Email: [email protected] | rippleability.org
