National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1023
To whom it concerns,
I am the mother of a 43 year old participant. My son lives with intellectual disability, severe expressive & receptive language disorder, hearing loss, autistic traits, schizo-affective disorder and anxiety disorder. At first glance for the general public and law enforcement these are “invisible “ deficits and conditions. But my son’s functionality is greatly impacted in all facets of daily life, both inside our home and out within community and social settings. I am his only informal carer and I retired early from my nursing career, and used my superannuation to do so. I now live in poverty just managing to pay my mortgage etc. Prior to the NDIS I had no formal support for my son. We were bounced between health systems, disability and mental health. Everyone saying we were someone else’s “problem”. Our family life was distressing and exhausting. As a sole parent working I had to balance life with my four children. My health deteriorated at a young age.
Once my son was accepted to the NDIS our lives found some stability. I could be a grandmother, occasionally catch up with family members and resume some very part- time, casual work…until my age & health finally ruled that out. My son gave up smoking, required lower doses of medications and found joy in participating in art, hobbies and sports. My carer role became sustainable.
My son didn’t get early intervention as back at that time i could not afford therapies. I am greatly concerned that expanding the idea of what are parental responsibilities is a huge step back to dark and sad times. As life progressed because my son had very limited early interventions he and I spent endless hours in A & E departments, police stations, courts and government departments. I now again fear for the future of children. I fear for my grandaughter who has improved wonderfully with her current therapy regime. What lies ahead should her accessibility or therapies be cut. And for my son who is a middle-aged man who has evolved into a full life of hobbies, interests and friendships only BECAUSE he has had extensive1:1 support for social and community participation within his NDIS plans. The prospect of this support being cut is devastating and I am heart broken. He is an active man and I am an elderly mother, I can not assume these community roles and it is not appropriate that an adult man be accompanied in to social settings by his aging mother.
My son is very fearful of formal settings due to our life experiences in meetings, doctor’s surgeries, courtrooms and the likes. Many of these places are hostile environments for people living with disability and those who love and care for them. We spent thirty years jumping through hoops and kicking through shifting goal posts, the recently announced changes to the NDIS are extremely frightening for my family as a whole.