Submission 2280

The NDIS is an invaluable resource that suppo1ts not only people with disabilities, but also those who care for the• . M experience with the NDIS has been through my sister who has a 15-year-old daughter, , who has Cri du Chat syndrome, a rare genetic disorder that impacts eve1y aspect o er life, including her ability to move, communicate and to perfonn everyday tasks that most of access without a second thought.

Being- ’s aunty has been life changing for me too. She is an inspiration to those around her because of her detennination and stamina and her wit. Before I knew_, ifl saw a person who had obvious challenges with gross motor skills such as walking, I would see the deficit, that they were not able to walk n01mally. Now, when I see someone walking in spite of obvious challenges, I see the results of hours of therapy, of persistent but gentle encouragement from the people around them and their own dete1mination in having overcome major obstacles that I have never had to face due only to chance.

My sister is- ’s main carer, and although she has built a community around her for 1t, this has been through her own effo1ts and dete1mination. She fights fiercely for ’s rights to experience the “nonnal” joys and day-to-day things that most others take foriigranted - things like going to school, or an outing to a cafe for a hot chocolate with friends, or attending a family event. But this shouldn’t need to be a fight. It should be the minimum expectation we would accept for a citizen of a developed countiy in the 21 st century. While my sister tends to share mostly the “highs” on social media - those moments when- is experiencing the joy of life and n01malcy, each of these moments has only been possible because of the work that she has done behind the scene to make these simple moments possible.

The proposed changes to how “pe1manence” is defined are concerning. Cri du Chat syndrome is a genetic condition that is lifelong and there is no “cure”; however,. ’s needs are not fixed. When she was a toddler lifting her was manageable and helping a small child with personal care is unremarkable. ~~w a teenager and she deserves the same dignity as any other 15-year-old girl. Bee~ is no longer a toddler, but still needs help with mobility, self-care and communication, for- to leave the house takes careful planning and co-ordination. She requires equipment to assist with mobility and communication and consideration needs to be given to access to buildings and essential facilities such as toilets that are suitable for her needs. This is not just a practical matter; it is a matter of dignity and equity. - requires physical assistance to get into and out of the car and to move around in the space. Continually providing this physical suppo1t to_ becomes more taxing as she grows into adulthood, and the physical sti·ain takes its toll on my sister’s physical health, with back pain a common issue, at times requiring medical intervention. CmTently, through NDIS funding and the impressive organisational effo1ts of my sister, - is able have carers to assist her with some of these physical challenges, which takes some of the sti·ain off my sister, but there are still many times that there are no carers present and- requires full time support. Any definition of functional capacity must account for the reality that needs change across a lifetime. What- required at 5 is different from what she requires at 15 and will be different again at 25.

The “little things in life” such as going to school and hanging out with friends are eve1yday experiences that most would consider basic expectations for a teenager in Austl’alia. Because of her communication challenges, - uses eye-gaze technology to communicate with others. This equipment is expensiv-:=bulky and requires tl’aining to be able to use. - also communicates using basic keyword signing, gestures and some verbal communication,

Submission 2280

but communication only works if others can understand you. Because of this, my sister has used her own time and funding, along with suppo1i through NDIS funding to train others in •s community, including family members, friends, teachers, teacher aides, and carers to ~ e to understand and use some of~ communication systems. This has been an eno1mous effo1i, but it is fundamental~ being able to access her human rights to frien.hiand being paii of the community. Social connection is essential to wellbeing for both and her family. If- is unable to access sufficient suppo1i through the NDIS, his opportunities to paiticipate in social interactions will be diminished, but so will my sister’s. - accesses suppo1is through her school, but the NDIS fills critical gaps that no other system is designed or funded to cover, paiiicularly ai·ound personal care,communication equipment, and community pa1iicipation outside school hours.

NDIS funding has provid~ite for- and her fainily. Even though she communicates through different modes,_ is a teenager and she does not want to have to spend all of her time with her mother and have her mother present at eve- social event. This would be awkwai·d for- and her peers. NDIS funding allows to spend time hanging out with friends without having her mother there, and it also allows my sister much needed time to enjoy social connections with her own friends. Like any teenager,_ deserves the dignity of independence and age-appropriate social experiences.

As much as her outward appeai·ance and social media feeds might paint a picture of stoic resilience, being a pai·ent of a child with a disability is mentally and emotionally challenging.My sister has to continually fight for her daughter to access the fundamental things that other parents of teenagers simply expect, which is mentally exhausting. Having to hold in reactions when well-meaning but na’ive friends and family members make comments that show that they don’t really understand, and constantly advocating for recognition of eve1yday rights is frnstrating. Seeing her own friends’ children of a similai· age reaching milestones with minimal effort, some of these thatght never reach, is disappoint ere is a grieving that happens each time th’at’llllll’s peers reach a milestone that- is unlikely to reach like walking, talking, playing ~ riding a bike, having a first boyfriend and going out on dates. And it feels unfair that- has to work so hard to achieve the things that come so naturally to her friends. It is natural to feel anger, resentment, frustration and despair when eve1y day is challenging, but even feeling these emotions comes with a real sense of guilt. This emotional toll of feeling such negative emotions but not having an outlet to shai·e these, and feeling guilty about having nonnal human reactions takes a mental toll on parents of children with disabilities and my sister is no exception.

What is also often invisible is the enonnous ainount of unpaid labour and additional financial burdens canied by the families. The appointments, advocacy, coordination, emotional load, training, transpo1i, communication suppo1i, behaviour suppo1i, and constant problem-solving required just to make eve1yday life accessible and ordinaiy. Any suggestion that NDIS funding could be reduced reflects a misunderstanding of the real cost of supporting a person with a disability to enjoy experiences that are simply expected for eve1yone else. Mandato1y plan renewal processes add to this ah-eady significant burden, creating anxiety and unce1iainty at regulai· intervals for people whose disability is lifelong and whose needs, while evolving, are not going away.

Over the past years, the NDIS has been a significant support in allowing my niece, my sister, her husband, and son to be a “no1mal” family who can experience “nonnal” things that are the rights of Australian citizens. - is a valued member of her extended family and

Submission 2280

community and NDIS funding is critical in ensuring that she can continue to be part of this community. It is not a luxury or an unnecessary expense. It is a vital lifeline for people with disabilities and those who care for them. A policy that requires participants to exhaust all available treatments before being considered eligible is unfair and inequitable. Expecting people to access treatments that may be unaffordable or inaccessible before they can be considered eligible is grossly injust and unworkable. Flexibility in how funds are managed and spent is important since every person with a disability is a unique individual with unique challenges and in a unique situation. Families like ’s who rely on this funding are already facing incredible pressures. Support needs to allow for flexibility for people to access without putting additional obstacles in place that delay families the support that they need and deserve. I urge the committee to reject any provisions that would reduce flexibility, restrict eligibility, or cut supports for people with significant and permanent disability.

I would ask the committee to consider the following:

• Retain flexibility in how NDIS funding can be used, recognising that every person with a disability has unique and evolving needs
• Ensure the definition of permanence explicitly accounts for lifelong genetic conditions where needs change across a lifetime, rather than requiring participants to exhaust treatments that may be unavailable or unaffordable
• Protect capacity building supports, particularly communication training, which enables participation in community and reduces long-term costs to other service systems
• Ensure plan renewal processes do not create additional administrative burden for families already carrying significant unpaid caring responsibilities