Submission 2790
The recent NDIS announcement has us concerned and worried for my son’s safety and future.
I am 39 years old and live with my husband A and live in WA. We have a 6-year-old son, K, and A’s 14-year-old son, D, who lives with us full-time. A works FIFO (2 weeks away, 1 week home), so I am the primary caregiver most of the time. I work part-time (38 hours per fortnight) as a mental health worker.
I have a history of anxiety and depression and was diagnosed with C-PTSD after K’s birth. I have recently been diagnosed with ASD Level 2 and ADHD (combined type). I experience ongoing fatigue and burnout. I have attempted to improve my wellbeing, such as starting Pilates, but had to stop as I could not manage this alongside caring for K, responding to school multiple times a week, running the household, and working. I require more downtime than average due to my own capacity, but I currently have none.
K has high support needs, and I am constantly managing school issues, therapies, and his daily care. This includes frequent calls from school, urgent emails, and needing to pick him up due to dysregulation. I am regularly taking unpaid leave as I have exhausted my paid leave caring for K and managing my own mental health. My work performance is impacted as I am often overwhelmed and distracted, and I have been unable to progress in my career despite wanting to.
We have very limited support. Both grandmothers live 2.5 hours away and are not able to provide regular help or babysitting. My mother visits every couple of months for a few hours only. I am estranged from my siblings due to a dysfunctional and abusive childhood. We have a very small friendship circle. My only close friend, who understands K’s needs, has recently moved 2.5 hours away.
K struggles significantly with emotional regulation, social interaction, and safety. His social capacity is around 15 minutes before he becomes overwhelmed and needs to isolate in my bedroom. If this does not happen, he may hit other children or throw objects. Because of this, we cannot have playdates at home or attend others’ homes.
At home, I am constantly managing conflict between K and his brother. K will hit, yell, and bang on D’s door when D needs space. D often struggles to communicate in a way K can understand, which escalates situations. I frequently need to intervene to keep everyone safe.
We rarely leave the house due to K’s anxiety, risk of absconding, and potential to harm others or cause a scene. For example, K runs off and hides in the community, so I have had to purchase tracking devices for safety. I often rely on screen time just to keep him calm long enough to complete basic self-care tasks. By the end of the day, I am completely exhausted and spend my only free time recovering in bed.
School and care environments are extremely challenging. K has a history of:
- Running out of school grounds and finding me in the car park
- Attempting to leave the school office, requiring doors to be locked
Submission 2790
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Refusing to enter class at drop-off, which is distressing and highly visible to other parents
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Being unable to safely attend OSHClub, including absconding on excursions, refusing transport, toileting accidents, and hurting other children
We have applied for Eden hill primary school for the SLP (specialised learning program) they have for kids like K but the waitlist is significant with no timeframe and a place not become available.
OSHClub has attempted to support him by placing him in a storeroom as a “quiet space,” which is not appropriate. Due to these challenges, my husband and I must take time off work during school holidays, which adds further financial strain.
K also struggles to participate in activities he enjoys. For example:
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Swimming lessons: out of a 9-day program, he only partially participated in 2 sessions. Other days he refused to leave home, get out of the car, or engage.
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Trampoline: he enjoys it but has been asked to leave sessions due to difficulty following instructions.
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Therapy sessions: he often runs away, avoids participation, or becomes dysregulated, requiring me to be actively involved to help him engage
Despite this, when K is regulated, he learns very quickly. However, he is currently falling behind at school due to frequent dysregulation and time spent out of the classroom multiple times a day.
There are also ongoing financial impacts. We have personally funded:
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Sensory equipment (e.g. a sensory swing, which has reduced destructive behaviours in his room)
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Tracking devices for safety
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Constant replacement of socks as he removes them at school to regulate
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Educational apps to support learning at home
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A mobile hairdresser for the past 3 years
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Additional fuel and costs for therapy and appointments
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My own psychological care There is no time for self-care or for my husband and I to maintain our relationship. We cannot access babysitters due to both cost and concerns about K’s safety and support needs. We rarely spend time together beyond occasionally watching a movie, as we are both emotionally exhausted.
Ks recent NDIS plan review is only funded for therapies that won’t cover his needs or support our family.
K has been diagnosed with ASD Level 2 with PDA profile, ADHD (combined), developmental delay, cognitive and psychosocial disabilities. He is socially isolated
Submission 2790
and struggles to engage with peers, but he is bright, curious, and has goals for his future, including wanting to become a scientist.
We are doing everything we can to support him, but we are overwhelmed. We need consistent, appropriate supports to ensure K’s safety, development, and wellbeing, as well as the wellbeing of our whole family.
Kind regards,