Supporting children with disability in home-based care

by Deb Tsorbaris, CEO

Children and young people with disability or complex medical needs in out-of-home care face many barriers to accessing medical and disability support.

Many children enter out-of-home care after experiencing trauma, abuse and/or neglect in the family home. Others are there because their parents can no longer cope with the complexity of their child’s needs and have not received the level of system support that might have enabled the preservation of the family.

As part of the Centre’s continuous work to understand and improve the work of our sector and help agencies better respond to the needs of carers and children in care, we surveyed agencies and interviewed foster carers to produce the Fostering children with a disability in Victoria report.

The results show our foster carers need ongoing financial, emotional, and practical support to continue caring full-time for a young person with a disability. Many carers interviewed spoke about the challenges they faced in being reimbursed for medical expenses.

These experiences have led to our national advocacy through the National Foster Care Sustainability Group for a healthcare access card to provide essential medical, therapeutic, and developmental services for all children and young people in out-of-home care. Like the Veteran Gold Card provided by the Department of Veterans’ Affairs, this proposed initiative aims to cover all medical costs, ensuring these children receive the care they need while relieving carers of the financial burden of medical expenses and assessments. This will ensure carers are not left out-of -pocket for medical expenses and assessments.

We’re also asking the federal government for better industrial conditions that will positively impact carers’ capacity to continue caring for children with a disability.

We support raising the ATO tax-free allowance threshold for foster carers so the states can better administer their systems and changes to the National Employment Standards to help foster carers in paid employment to start or continue fostering.

As the peak body for children and families in Victoria and Tasmania, the Centre for Child and Family Welfare is committed to improving the lives of children and young people with disability in the care system.

“It’s the best thing you’ll ever do”

Fostering a child with disability is a rewarding opportunity to impact a child or young person’s life positively. Foster carers interviewed in our study spoke of the privilege of being part of the lives of children with complex needs and the many benefits for themselves and the young people in their care.

“It’s challenging, it’s rewarding, it’s hard work, it’s an emotional roller coaster, it’s the best thing you’ll ever do!” – Foster carer

As Victoria, indeed the whole country, faces a shortage of carers, the Centre has begun to target foster care recruitment in Victoria through our Fostering Connections program, encouraging potential carers with the skills and willingness to support children with disability.

We know from service providers that many children with a disability enter the care system without a diagnosis. Sometimes, it’s not until the child is placed in foster care that the process of getting a diagnosis begins. This puts undue pressure on carers who are there to help but are unaware of the complex needs of the children placed with them until after the fact.

Children with disability continue to be overrepresented in care in Australia. While there is no nationally consistent definition of disability or reliable prevalence data, we do know that between one-third and one-half of children in care have a disability, usually an intellectual or cognitive impairment.

Our report represents 1480 children and young people in Victoria and is designed to help us better understand the prevalence of children with disabilities according to agency estimates.

Of this group of children, 41 per cent were reported as having a disability, with only 56 per cent having a NDIS plan in place.

Recognising complex needs

Recommendations from the Federal Government’s 2023 NDIS Review signal the need to build on existing supports and to increase investment in child and family services to support children and families who no longer qualify.

We will see many children and young people with less enduring disabilities transitioned out of the NDIS scheme and into community support.

The Centre is excited to work with federal and state governments to help roll out the new NDIS reforms, keeping children with disability, their families and caregivers at the heart of these reforms so no child is left unsupported.

In the longer term, there are opportunities to guide systemic review of out-of-home care with a lens on disability services that better reflect the realities of fostering children with complex needs and ensuring disability is embedded in all stages of the recruitment and accreditation process.

We want to see children with a disability who are placed in the care system being recognised as a specific equity group, with its own multiple and often complex needs requiring a nuanced and skilled response in the Federal Government reforms as these are implemented.

With awareness of disability front of mind, there are opportunities for the family and child services sector to design services that will have an immense impact and create change for children and parents with disability. We can help design a care system that gives carers and kids the support they need and empowers people with disability to have a stronger voice in the service system.

This blog was first published on Linkedin.