To whom it may concern,
I am a sole parent with a disability raising two children with significant disabilities. Both of my children have Autism Spectrum Disorder Level 3, severe intellectual disability, ADHD, and complex support needs. They require constant supervision, assistance with communication, personal care, emotional regulation, community access, and safety.
I am also an NDIS participant. I live with autism and mental health challenges and rely on disability supports to fulfil my parenting responsibilities safely and effectively.
My family demonstrates a reality that is often overlooked within disability policy: disability does not occur in isolation. In our household, disability affects multiple family members simultaneously. I am not only managing my own disability, but I am also the primary carer for two children with profound and lifelong support needs. The cumulative impact of these responsibilities is significant and should be better recognised within NDIS decision making.
In recent years I have observed increasing barriers within the NDIS that make it harder for families like mine to obtain the supports we need. Decisions are often made without meaningful consultation, evidence provided by treating professionals appears to be overlooked, and participants are left feeling that they must constantly justify supports that have already been demonstrated to be reasonable and necessary.
One of the most significant concerns is the ongoing confusion around what constitutes parental responsibility versus disability-related support. While all parents are responsible for raising their children, disability can create additional support needs that go far beyond what would be expected of a parent without disability. When a parent has a disability and their children also have disabilities, these challenges are compounded.
Support workers are not a luxury in our household. They are a safety support. They assist with supervision, community participation, emotional regulation, daily living skills, and ensuring my children can access opportunities that would otherwise be unavailable. They also help reduce the risk of carer burnout, family breakdown, and crisis intervention.
Without appropriate supports, I face the impossible task of meeting my own disability-related needs while simultaneously providing constant care and supervision to two children who cannot safely function independently. The result is often exhaustion, reduced community participation, declining mental health, and increased risk of family stress.
I am also attempting to build a future for myself through education and employment. I study at university, work in the disability
sector, and actively contribute to my community. Like many people with disability, I want the opportunity to participate in society, develop my skills, and maintain employment. However, this becomes increasingly difficult when disability supports are reduced or when I am forced to spend significant time and energy advocating for supports that have already been assessed as necessary.
The NDIS was designed to increase independence, participation, and inclusion. For parents with disabilities, this should include recognising that appropriate supports can enable us to continue caring for our children, participate in education, maintain employment, and contribute to our communities. Disability support should not be viewed as separate from parenting; for many families, it is what makes safe and sustainable parenting possible.
I am concerned that recent planning and review processes do not adequately consider the realities faced by families with multiple disabled family members. Funding reductions, delays, repeated reassessments, and the need to continually provide the same evidence create significant stress and uncertainty.
I am also concerned that families are increasingly expected to navigate complex systems without adequate support. Parents are required to become experts in legislation, policy, evidence gathering, and advocacy simply to maintain essential supports. This places an enormous burden on families who are already managing significant caring responsibilities.
Australia has committed to supporting the rights of people with disabilities to participate in family life, community life, education, and employment. In practice, many parents with disabilities continue to face systemic barriers that make these goals difficult to achieve. Disability should not prevent a person from being able to parent, study, work, or contribute to society when appropriate supports are available.
I ask the Inquiry to consider:
-
Greater recognition of the support needs of parents with disabilities.
-
Stronger consideration of the cumulative impact where multiple family members have disabilities.
-
Greater recognition that support workers can be a necessary parenting support where disability affects a parent’s functional capacity.
-
More transparency in planning and review decisions.
-
Greater weight being given to treating professionals and functional evidence.
-
Reduced administrative burden on participants and families.
-
Improved access to respite and support worker funding where there is evidence of significant caring responsibilities.
-
Better safeguards to ensure supports are not reduced without clear justification.
- Greater recognition that participation in education and employment should remain achievable goals for parents with disabilities.
The NDIS has made a significant positive difference to many lives, including my family’s. However, recent experiences have left me feeling that participants are increasingly having to fight for supports that are essential to their safety, wellbeing, and ability to participate in everyday life.
I hope the Inquiry listens closely to the experiences of families like mine. Parents with disabilities should not have to choose between caring for their children, maintaining their own health, pursuing education, participating in employment, or living a meaningful life. With the right supports, all of these things are possible. The NDIS should be helping families achieve those outcomes, not creating additional barriers to them.
Kind regards,