WHEELCHAIR ACCESSIBLE VEHICLE

PLEASE HELP ME GET OUT IN THE COMMUNITY AND TO SCHOOL

WHEELCHAIR-ACCESSIBLE VEHICLE !!!

I recently purchased a small affordable wheelchair accessible vehicle from a Perth dealership. It was a Japanese import - the dealership misled me into believing that the modifications were approved to Australian Safety Standard - which we've since discovered that it is not.

This lack of safety compliance could result in death and these vehicles should not be imported into Australia. The Department of Transport quoted that this is “a grey area”.

We are now undertaking the process to get our money back on this car that was sold to us with false information.

In the meantime, Emily doesn't have a safe mode of transport. We are in desperate need of an approved wheelchair-modified vehicle.

Due to Emily's severe intellect and physical disability, she doesn't have the cognitive abilities to get herself in and out of the car. Furthermore, I could no longer lift Emily (44 kilos) in and out of the car. She does not assist; she frequently drops to the floor, and she bears all her weight onto you and grabs onto you.

Emily has dangerous and distracting behaviours of concern while seated in a passenger seat in a normal seatbelt. Behaviours range from squirming her way out of her seatbelt, kicking her legs up at the windows, kicking the back of the seat in front, and grabbing onto to driver or front passenger, she needs to be seated safely in her wheelchair while travelling in a car.

NDIS does not fund wheelchair vehicles, they may give you funding towards the cost of conversions/modifications for a vehicle, but this is an extremely lengthy process. Vehicle modifications/conversions that are needed to be done on a car that can be converted (The recommended vehicle is a Kia Carnival or similar) can take up to 12 months. This imported vehicle was available right away, it was affordable to me at the time.

NDIS's processes are very lengthy and mentally draining, the system is broken!!! They are making decisions on set guidelines and not looking at each individual's needs.

Now added to the current stress and strain to go through the AAT process against the NDIS.

NDIS SLASHING PRECIOUS FUNDING 

I am now advocating for Emily, against the NDIS (National Disability Insurance Scheme) which has significantly slashed her already limited funding and based its recent decision for her new plan on old/outdated reports which is against their regulations and without a review discussion/meeting.

They have disregarded comprehensive reports from four (4) NDIS Healthcare Service Providers being an Occupational Therapist, Physiotherapist, Positive Behaviour Specialist and Speech Therapist.

Emily is now at risk of not receiving the help and services she needs to support her highly complex needs and is at risk of further deterioration, isolation and an

escalation of challenging behaviours. If Emily doesn’t receive the recommended funding, she will be at risk of deterioration in her functional independence including all mobility and self-care tasks as well as participation in activities of daily living - and result in higher levels of seclusion - which would be avoidable.

These recommendations were for new equipment as she has outgrown her current equipment (4 years old), hours for 2:1 Support from Support Workers, and the hours she needs for Physiotherapy, Occupational Therapy, Speech Therapy and Positive Behaviour Strategies training for Support Staff.

The extreme lack of empathy and discourtesy was appalling and their disregard for anything I had to say is very distressing.

I am now forced to appeal at the Australian Appeals Tribunal AT against the NDIS.

DIAGNOSIS

Developmental and epileptic encephalopathy-64 (DEE64) syndrome due to a gene fault in the RHOBTB2.  - The condition is extremely rare and causes severe intellectual and physical disability and epilepsy. Associated with this syndrome, very poor motor development, and poor or absent speech. Additional features include hypotonia, abnormal movements, (movement disorder), microcephaly, ataxia, episodic hemiplegia, strabismus, and nonspecific dysmorphic features. Some children learn to walk later, some can stand and walk with support, and some do not learn to walk at all.

Wolff–Parkinson–White syndrome (WPWS) – involves an extra signalling pathway between the heart's upper and lower chambers causing a fast heartbeat (tachycardia). WPW syndrome is a rare heart condition present at birth (congenital heart defect). 

Cerebrovascular accident (CVA) - is the medical term for a stroke.

A stroke is when blood flow to a part of your brain is stopped either by a blockage or the rupture of a blood vessel. The symptoms of a stroke can vary depending on the individual and where in the brain it has happened.

EMILY'S STORY

Emily was born on the 26th of March 2012 via cesarean section (at Armadale Hospital) at 38 weeks gestation following mostly an uncomplicated pregnancy, however with ‘limited movements.’ and undergoing a planned cesarean section secondary to decreased fluid around the placenta raising concerns. 

At birth babies generally cry, but Emily was silent, the anaesthetist noticed Emily ‘wasn’t breathing’ and was quickly transferred to the neonatal intensive care unit in Armadale Hospital then was soon transferred to (NICU) at King Edwards Memorial Hospital (KEMH) for three days. Following the three days in NICU, Emily was transferred back to me at Armadale Hospital, and we were discharged with no concerns following a standard-length hospital stay. 

I started to recognise abnormal eye movements from a few weeks old and Emily presented as difficult to feed post-birth. 

I continued to be concerned regarding Emily's not meeting developmental milestones, which the child health nurse further identified by 12 weeks of age. At around a similar age, I began noticing Emily having periods where she appeared absent, it was later identified Emily was experiencing seizures. 

Emily’s seizures started to become more apparent to others and resulted in intensive care unit (ICU) admissions at 6, 12 and 18 months old. At 18 months old, Emily received a diagnosis of epilepsy and a secondary diagnosis of Wolff– Parkinson–White syndrome (WPWS). 

Additionally, at 6 months of age, Emily’s child health nurse referred her to Child Development Services (CDS) secondary to the delay in meeting developmental milestones, where she was assessed and diagnosed with Global Developmental Delay (GDD). 

Emily commenced receiving therapeutic support including physiotherapy, occupational therapy, and speech pathology. 

Emily continued to present with a significant delay in speech and motor milestones, she did not begin to walk until four years of age. 

At age four, Emily’s neurologist queried a diagnosis of Angelman Syndrome. After ongoing genetic testing, Angelman Syndrome was ruled out, however, she received a clinical diagnosis due to presenting with very similar characteristics and traits. 

In July 2018 Emily experienced a cerebrovascular accident (CVA), impacting the right side of her brain, therefore physical impairments on the left side of her body. Emily’s CVA resulted in a 6-week hospital stay including a 3-week rehabilitation stint. 

In July 2020, Emily experienced a second CVA resulting in a similar time spent in the hospital, the second CVA impacted the left side of her brain and therefore, the right side physically. Throughout the time in between both of Emily’s CVA, her neurologist was continuing to complete genetic testing including having blood samples sent over to the eastern states of Australia for testing. 

In February of 2021, Emily was diagnosed with Developmental and epileptic encephalopathy-64 (DEE64) syndrome, due to a gene fault in the RHOBTB2 gene. Her diagnosis is extremely rare, with Emily being the only known case within Australia and 1 of approximately 35 cases worldwide. 

Emily, however, is the only person globally with a variant of genetic defects. Secondary to her diagnoses, Emily presents with significant developmental delays across key developmental areas including gross motor and fine motor skills, speech and language, cognitive abilities, sensory processing, and social and emotional skills all impacting her participation in age-appropriate tasks. Emily requires a high level of support to participate in age-appropriate tasks and to meet her disability-related needs. 

Her already limited mobility over the last 24 months has dramatically declined, and with limited resources available it is known that mobility and other functions may regress / decline. She needs to wear a rugby helmet as she is a high falls risk.

She has unpredictable behaviours of concern, and involuntary movements, she kicks, bites, grabs you very hard, and pulls hair. These behavours make tasks, such as bathing, dressing, general hygiene, cleaning her teeth and brushing her hair extremely mentally and physically challenging.

This is consistent with her developmental stage given that she has a significant intellectual disability along with high complex needs. Emily doesn’t understand instructions and you cannot reason with her. Her behaviour is NOT malicious, she doesn’t understand. Saying this Emily is such a loving little girl, she gives so much love, she loves people, loves hugs, and anyone who comes into her life adores her.

Emily is a 6–12 old month baby in a 10-year-old body, with the strength of a 17-year-old teenage boy. Emily is extremely sensory driven, she puts everything in her mouth but unfortunately doesn’t understand what she is putting in her mouth (soil, sand, her faeces anything) and has the need to touch everything. She has no awareness of danger or surroundings. Due to Emily's very high sensory needs, outside of her immediate family, unfortunately, she has badly bitten teachers and support workers.

Emily is extremely vulnerable she has no awareness of her personal space (dignity) or others' personal space. Emily has no awareness of puberty and that her body is changing and why her body is changing. She has no awareness of her bowel movements or bladder movements. "I couldn't imagine what it must be like for a father having to change his nearly 11-year-old's nappy, including bathing and showering her"

She has no idea about road safety, she cannot use utensils to eat, she uses her fingers, she cannot drink out of a cup she can only drink from a drink bottle. She is fully dependable on others for her every day daily life and personal care. She will never be independent or can learn or progress.

Emily’s only pleasures in life are having a family and people around her who love her, she loves her food and loves having a bath (which she cannot get herself in or out of the bath and needs strict support during her bath).

Emily is unable to walk freely around the home due to her safety and the safety of others. If Emily was left to walk freely around the home, she could seriously hurt herself, will destroy household furniture, TVs would be pulled over, and anything she could pick up she would throw. She wouldn’t know to touch the oven, or if a kettle was hot, or not to touch a gas fire.

Due to Emily’s inability to walk freely around the home we had to convert our Alfresco into her playroom (seclusion), it's her safe area to be free. We installed high-quality remote blinds, soft colourful flooring like in playgrounds, a TV as she watches ABC for kids, heating a Fan, her Gravity Chair (like a little sofa), a sensory colour crash mat (like a mattress-size pillow) and toys. This is where Emily spends her time at home other than her bedroom which is simple, with her bed, soft carpet and toys. No other furniture for the risk of injury. Her bedroom has a child’s safety gate, and her bedroom door has an outside lock which is only locked at night-time once she is asleep in bed for her safety and so I can sleep through the night knowing she is safe.

Emily spends 5 nights per fortnight at her dad's house. Apart from her recent Gravity Chair (like a little sofa) purchase, he has no other equipment at his house as NDIS won’t fund two houses. Her dad is forced to hold a 10-year-old at the dining table at mealtimes, with her unpredictable behaviour and involuntary movements this is a choking hazard but left with no other choice. She eats separately from the family and spends the majority of the time in her bedroom for her own safety. 

Emily is under the care of a neurologist, at Perth Children’s Hospital (PCH) who completes regular reviews. She is also under the care of other specialists including the rehabilitation team, cardiology team and genetics team at PCH.

I am asking for help to purchase an Australian Safety Standard wheelchair vehicle to be used between her two-family homes, so Emily can be taken out into the community and to her school safely. Along with the equipment and the support Emily needs.

Thank you in advance for the time reading this, as I am aware it is extensive.

Please see youtube video footage.

https://youtube.com/shorts/7P-Ql5oUryw