Advocacy for Inclusion (AFI) incorporating People with Disability ACT (PWDACT) recently made a submission to ACT Legislative Assembly’s Standing Committee on Health and Community Wellbeing. This Committee is currently undertaking a review of ACT health programs for children and young people.
Focusing on the experiences of children and young people with disability, our submission explored key barriers to meaningful participation in ACT health programs. We found that children and young people with disability can face an array of issues in accessing both general and specialised health and assessment programs. These include the (un)accessibility of health services, economic barriers, stigma and misconception, and poor professional competency specific to disability. These barriers can contribute to diagnostic overshadowing, misdiagnosis and negative experiences leading to lifelong distrust of health services. In some cases, children and young people may be directed into the criminal justice system due to the criminalisation of disability-related behaviours.
A significant systemic barrier is the poor availability of services, which arises in part due to the Government’s over-reliance on the National Disability Insurance Scheme to provide support services for children and young people with disability.
In addition to these general barriers, the submission also addresses issues specific to children and young people with Fetal Alcohol Syndrome Disorder (FASD); issues specific to accessing mental health programs; and, issues specific to young women and girls with disability.
FASD is one of the leading causes of preventable birth defects and intellectual disability, yet the ACT does not have a FASD diagnostic clinic. Children and young people with FASD are also overrepresented in the criminal justice system and require significant additional health-related supports to remain in the community. Our submission highlighted the lack of progress in the ACT since MLA Elizabeth Kikkert brought a Bimberi Youth Detention Centre, Screening Practices, Foetal Alcohol Spectrum Disorder motion, amended and agreed to in 2018, including identifying ‘best practice approaches and tools for the diagnosis and treatment of FASD, both in juvenile detention settings and in the community’.
Issues specific to mental health programs include the under-recognition of mental illness in children and young people with disability. Children and young people with disability often have coexisting mental illness, however they are less likely to receive treatment and support. This is as they are more likely to present atypically or experience diagnostic overshadowing as professionals often have difficulty distinguishing between mental illness and disability-specific behaviour.
Finally, the submission noted that young women and girls with disability are at greater risk of abuse. We believe that ACT health programs have an important role in protecting children and young people with disability from domestic and family violence.
To address the issues raised throughout the submission, AFI made the following recommendations:
- Prioritise the resourcing, design and implementation of a Disability Health Strategy.
- Fully resource and support ACT Health services to progress and implement Disability Action and Inclusion Plans.
- Provide comprehensive disability awareness and education training for health service staff, with a focus on improving communication and access, and increasing health literacy and supported decision making for people with disability.
- Increase the number of people with disability employed by ACT Health services.
- Increase early support for disability, including identification and response.
- Establish specialist services in the ACT to meet demand.
- Fund community services to provide mental health and disability services to prevent acute presentations, and to support transition out of acute facilities into community options.