Children and Young People
Proposed change (Bill)
What this could mean in real life My experience / what I want the Senate to know section)
Children increasingly directed Families may be redirected away from NDIS toward Foundational supports into systems that are not yet fully Supports/Thriving Kids established. pathways
I worked full time in a high demanding well paid job in transport Increased reliance on parental The NDIS cannot fund support that reduce and had done for more than 10 years, pripr to children. After responsibility arguments. There is a the carer burden on parents below what is change to the Reasonable and typical for children of the same age. This getting married and 2 children later i was still the higher income Necessary criteria stating the NDIA takes into account transport,personal care, earner. we Were comfortable and doing well woth a house, 2 cars must remember parents are emotional support,behaviour support and and time to travel. but once my first child was diagnosed things responsible for providing a supervision. changed. when my second child was also diagnosed witha much substantial amount of support for more sever disability being moderate intellectual disability and The NDIA must look at whether funding their children. autism. I felt like my life was over, devestated to think that this boy support like support workers would expose will live with me forever and what will happen to him when i die. the participant or someone else to risk of DV lead to divorce and now a single mum with 2 disabled children. harm Families may be expected to absorb additional caring responsibilities regardless of work commitments, health, finances or of work commitments, health, finances or sustainability. The NDIA would also be sustainability. The NDIA would also be prevented from funding supports simply prevented from funding supports simply because they make family life easier, reduce because they make family life easier, reduce the amount of time parents spend caring, or the amount of time parents spend caring, or because a parent would prefer not to provide because a parent would prefer not to provide that support themselves. that support themselves.
- then give us a call on the emergency call line. I thought my son’s diagnosis of intellectual disability, the possibility of him needing care for his whole life and e was devastating but i was wrong. iv’e lost everything for my boy. my career, house, money, savings, my whole life and now im at the point of living on the street. i have nothing left to give, iv’e given my all and is NDIS is taken away i don’t know where or how you expect us to do more. with what? how? we already do everything possible.
How much unpaid care should parents,
siblings, grandparents and other informal supports be expected to provide before disability support becomes the responsibility of the NDIS?What risks exist if this paid or unpaid support breaks down?
Governance and Ministerial Powers Proposed change (Bill What this could mean in real life My experience / what I want the Senate to section) Significant decisions about eligibility,budgets, support categories and planning could potentially be changed through instruments and rules rather than through the full Parliamentary process.
Greater reliance on legislative tools and delegated rules Minister may temporarily modify The Bill allows the Minister to temporarily how parts of the Act operate change how certain parts of the NDIS Act (Schedule 5transitional powers) operate without having to pass a new Act of Parliament first or uses the usual parliamentary process. Families may wish to consider whether important changes should always be debated and approved by Parliament.
Minister has greater influence over pricing While the NDIS Review recommended an arrangements independent organisation should set pricing (such as IHACPA) this bill transfers pricing
power directly to the NDIS Minister with
advice from the Agency.
Self-Managers would still be able to pay above the Pricing Caps.
Different pricing caps can also be set for different providers (i.e. registered and unregistered).
What conflict of interest exists when the Minister responsible for controlling (and right now reducing)NDIS expenditure is also given the power to set the prices the Scheme will pay?
Informal Supports and Carers Proposed change (Bill What this could mean in real life My experience / what I want the Senate to know section) Increased reliance on After leaving a domestic violence riddled marriage with 2 special When formal supports are reduced,the work informal supports and needs children life was hard. I left my full time high paying job after does not disappear. It is often transferred to unpaid carers my youngest was diagnosed first with a sever speech delay and parents,grandparents,siblings and other global development delay at age 4, later diagnosed as Autism and family members,disproportionately moderate intellectual disability. i took a year off work focusing on impacting women. his learning in the hopes intensive therapies, self managed, would How will this impact women with help him ‘catch up’ so that he could be in main stream school. After disability in coercive control situations? all those therapies ESDM, speech, psychology, OT , paeds How will this impact women in paid appointments, sensory play centres, trying different things at home employment? to manage his meldowns, sleep and co regulation. I was burnt out and although he did develop and imove his abilities it wasnt enough and ended up in a support class. I dont have informal support. carer gateway/wellways helped for a bit during covid but after that they
- could only help a tiny bit. they would allow a set budget and then I was cut off for a year and not able to access more support. My Mum is elderly and had a double knee replacement, she cant handle a stong boy that towers over her at now age 8. His agression has cuased injuries to me, my mum, broken toys, Tv, windows, doors, walls, phones, ipads, table, chairs, anything you can think of. The expectation that we can do more because im his mum! what about me and my mental health, physical health, ability to care for his sister? I have no life, no time to myself, time for self care, time to find a partner. my life revolves around him. Having just 1 support worker now that knows him, has built trust with him means I can take an hour to shop child free.that his support worker can take him into the community safely and that I dont have to be there is a blessing.
Extra Writing Prompts
Proposed change (Bill What this could mean in real My experience / what I want the Senate to know
section) life
When support stops being What happens next? Who does I started to work part time just 2 days a week, a significantly lower funded… the work? Who pays the cost? paying job with less mental demand. When my son has no funding or has Who carries the risk? his cut even more than it already has been, then i can no longer work.
Hes been suspended from school, kicked out of daycares, after school cares, vacation cares and family daycares. that leaves me as his only person. That means my mental health, physical health will decline. I wont be able to work. I will be sick more often, require more visits to my GP, increase sessions with my psychologist. My son, his dehaviour will go backwards, his skills and abilities will regress, his self care will decline and he will be more reliant on me.
What disappears when If social and community participation funding was participation disappears? reduced,what would be lost? Friendships? Employment opportunities? Community membership? Sporting clubs? Independence? Confidence? Mental health?
Would they stop attending sport? without these supports he would not be able to develip social skills, life What would my child stop doing Seeing friends? Going to work skills, self care, play sport or do anything. he is not capable of being without these supports? experience? Learning travel independent and i thought our society was past locking up disabled skills? Accessing the community? people in institutions. i feel this is how life will be but they replaced Building independence? institutions with the family home and the ward staff with just the mother.