Dear Sir/Madam,
I am the mother of three children, two of whom are accessing the NDIS for disability supports. My husband also has a number of degenerative conditions causing significant disability- despite attempts to access the NDIS his access has been denied. We live in NSW.
My youngest son, 15 month old “K” has an undiagnosed rare genetic condition causing him to have cortical vision impairment, epilepsy, severe global developmental delay, very low muscle tone causing limited mobility, he has been nil by mouth and has been on continuous 24/7 tube feeds for all but 9 weeks of his life as any oral intake is aspirated into his lungs. K’s neurological deficits mean that unlike most children his age he is unable to sit up without significant support from a custom prescription postural chair. He is unable to crawl, stand or walk. He will be PEG fed attached to a feeding pump 24/7 for the rest of his life. He will not be able to feed orally.
Following an admission to hospital in September 2017 at 4 months of age, I made contact with the ECEI partner in our area as directed to arrange for access to the NDIS for K. At this time we were told that due to the COAG agreement on the order of rollout in our area, there would be no early access to NDIS for K and it may take as long as a year or two for the ECEI partner to get to K for a planning meeting. We were advised to contact ADHC to access NSW state disability services in the meantime. We were told that there were no longer any services available through ADHC.
Effectively we were discharged to home with a child with very complex health and disability needs with no access to outpatient allied health services to follow up with, no access to disability services, and no pathway to access the equipment he needed to access the world given his disabilities.
After much advocating on my behalf, contact with our local MP- Sharon Bird’s office, and a plea to the Minister for Disability (at that time it was Christian Porter) finally in December I was contacted by a senior planner from the NDIA to let me know that K had been given access to the NDIS under a ministerial directive. We were put in touch with our local ECEI partner to have a planning meeting for K within a few days. Our LAC was very thorough in getting an understanding of K’s needs immediately, and also what he would need within the year of his first plan. This included a request for AT to be listed for a bath seat, indoor postural seating system, stroller with postural seat, car seat, sleep system, and a standing frame. These were the pieces of equipment that K’s physiotherapist and Occupational therapist had flagged as being needed to assist K in the next 12 months.
We were very disappointed when we received K’s plan- it took until April 2018 to be completed- a very long 6 months after his diagnosis and initial contact with NDIA, and 4 months after his planning meeting. Sadly the planner who built K’s plan decided despite the extensive info provided by our LAC that K should have a rental component in his plan for 5 pieces of AT equipment that he required, as well as funds of $357 to purchase a bath seat. A paediatric bath seat to meet K’s postural needs is not available for this amount. A seat that will actually meet his needs can cost upwards of $2000.
After many phone discussions with a senior planner at NDIA we were told that an AT report needed to be submitted along with a quote for the bath seat after all other options had been trialled. After many efforts to engage an OT with the relevant registration for paediatric equipment prescription and who also had immediate availability (we found that many providers across all of the allied health
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disciplines had long waiting lists or had closed their books completely) we then attempted to arrange equipment trials with several providers- again there are not many providers who sell specialised paediatric equipment, and they had very little availability (if they even returned calls or emails which many providers did not), and a long wait if they did. Due to the number of pieces of equipment K needed as it was a new diagnosis, each AT request requires upwards of 5 hours of assessments and equipment trials before it can be submitted to NDIA. Given K’s very young age- at this stage he was 10 months old and still requiring many hours of sleep per day. He also due to the complexity of his health and disability needs is under the care of 10 paediatric specialists as well as 4 allied health professionals. Most weeks over the last year he has had minimum 3-4 appointments each week often with a 2 hour return trip to Sydney Children’s Hospital. To arrange for 5 hours of assessments for 5 pieces of equipment, split up into no more than 1 hour sessions in a day, while fitting around therapist availability, equipment supplier availability, and all of K’s other medical appointments was near to impossible.
All of this extensive testing and reporting to even be considered for equipment to meet his basic needs has been an ongoing frustration to me as his mother. It also forced us to make the impossible decision to forgo active therapy which K really needed as we did not have enough funding in his plan to fulfil all the AT requests, let alone have any left for active therapy. Under previous state disability services, I have been told by therapists and other parents, K would have had equipment to meet his needs within 1 month of his referral to disability services.
K has now been waiting 11 months. He is confined to his bed 22-24 hours a day as he has no suitable seating, he is sponge bathed in bed as he has no bath support, if we leave our home he is lying flat in a pram as he does not have supportive postural seating on his pram to be able to sit up. We are unable to rent the equipment he needs as there are no providers who offer rental of such specialised paediatric equipment. This has been raised with NDIA on many occasions since his initial plan was activated in April 2018. I was advised to get the AT requests done and submitted and they would be considered, but it would need a plan review to change the rental component of K’s plan to purchase.
At requests for the bath seat and standing frame were finally completed and submitted to NDIA in early June 2018. NDIA did not consider these until we submitted an urgent review in late August. Finally only on the 13th September 2018 was the bath support approved and ordered, and on 4th September the standing frame was approved and ordered. It will still take some time to be delivered as much of the paediatric mobility equipment on the market has to be shipped from Europe. It is not just an off the shelf purchase, so any delays in having a plan with the correct AT listed for purchase not rental, getting all the required paperwork completed and then waiting an undetermined length of time for NDIA to even look at the request let alone process and approve it before it is even able to be ordered. I suspect if I had not been advocating so strongly for my child on the basis of his human rights being breached, we would still be waiting for a plan review to list the equipment for purchase, let alone having the AT requests processed and delivered.
K is first and foremost a little baby. He happens to have a number of disabilities, but despite that he should not be denied access to his family home, meaningful interactions with his parents and siblings, as well as age appropriate access to the wider community. His developmental delays already hamper his early childhood development. Placing further obstacles such as lack of equipment in his way is having a detrimental effect on the rest of his development- all of this in a time critical window of neuroplasticity in the first few years of life. This period is critical to K’s long term outcomes as far as having any functional vision, maximising his mobility, developing functional
- communication methods, as well as stimulating him intellectually.
It is not acceptable for a 15-month-old child to be confined to his bed. It is also not acceptable that K has had to have further investigations done to check the alignment of his spine and hips due to having no access to suitable supportive equipment.
We still await approval for AT requests for a paediatric high-low bed for K, an inside high-low postural seating system; we are still awaiting suppliers to arrange trials for a suitable stroller, car seat and sleep system - this will also be determined by the outcome of the AT request for the bed.
I am happy to be available to provide any further information you require for this inquiry.
I hope that some meaningful changes can be made to the current system to alleviate the current delays that we have experienced accessing equipment with a new diagnosis in a baby. The delivery of assistive technology, especially in early childhood is time-critical and needs to be facilitated quickly for the best possible outcomes to be achieved.