An exhausted mum who woke up with half her face paralysed is blaming the stress of the NDIS for her predicament.
Jess Schumacher’s son Tommy, 4, suffers from permanent Perthes disease – a condition that affects the hip joint. Tommy relies on a wheelchair to travel to daycare, medical appointments and therapy sessions.
While the NDIS approved funding for a wheelchair last year, the Schumachers were told a vehicle to transport it was a ‘parental responsibility’, despite Tommy experiencing significant pain every time he is transferred in and out of the family vehicle.
The NDIS also refused to fund the assessments required to determine the modifications that Tommy requires, which cost around $8,000.
‘Tommy needs to safely access a vehicle in his wheelchair. Without these assessments, we cannot even begin the modification process,’ Ms Schumacher said.
Feeling she had no other option, Ms Schumacher is now trying to raise $80,000 for a specially modified van with a wheelchair lift.
But she says the pressure of working full-time, studying, raising two children and navigating Tommy’s complex medical needs eventually took its toll.
‘Half my face is paralysed from Bell’s palsy,’ she told Daily Mail.
Ms Schumacher woke up with half her face paralysed as she battles to raise money for her disabled son after the NDIS rejected the family’s bid for support
The NDIS approved funding for a wheelchair last year but the family were told a vehicle to transport it in is ‘parental responsibility.’
Tommy, 4, suffers from permanent Perthes disease and relies on a wheelchair to travel to daycare, medical appointments and therapy sessions
While the exact cause of Bell’s palsy is unknown, Ms Schumacher believes her case was brought on by ‘stress and fatigue’.
‘This is what happens when families are pushed beyond their limits,’ she said.
‘Between fighting for supports, navigating funding decisions, working full-time, studying, raising a family and fundraising for a wheelchair accessible vehicle, the stress and exhaustion finally caught up with me.
‘No parent should have to become unwell while trying to secure the support their child needs to stay safe. Yet here we are.’
Tommy was diagnosed with Perthes disease at the age of two after Ms Schumacher and her husband Nick noticed he was limping and pointing to his hip, prompting them to take him for an X-ray.
Perthes disease occurs when the blood supply to the hip joint is disrupted, causing bone tissue to die and collapse. While some children recover as they grow, Tommy has been left with permanent damage.
‘Permanent Perthes disease means the damage caused to the hip joint is lasting and irreversible,’ Ms Schumacher said.
‘This can lead to ongoing pain, reduced range of motion, muscle weakness, difficulties with walking and mobility, fatigue and an increased risk of early arthritis.’
Tommy was diagnosed with Perthes disease at the age of two after he began limping and pointing to his hip, prompting his mother to take him for an X-ray
Since April the family’s GoFundMe has raised $15,240, about 20 per cent of their target
Since April, the family’s GoFundMe has raised $15,240 – about 20 per cent of its target, while Ms Schumacher has raised a further $1,000 through raffles and silent auctions.
‘We are not asking the NDIS to pay for Tommy’s van, we understand that purchasing a vehicle is our responsibility as parents,’ Ms Schumacher said.
‘But what we are asking for is funding for the assessments required to determine the modifications.
‘That’s around $8,000 but NDIS declined this funding, leaving Tommy without safe and accessible transport to access therapy, medical appointments and his community.
‘A wheelchair accessible vehicle is not a luxury for our family, it is an essential necessity and watching him experience pain every time he needs to be transferred is heartbreaking.’
Ms Schumacher said every day is a constant fight for Tommy’s safety and inclusion.
‘The reality is that we are trying to balance caring for Tommy’s complex needs while continuing to work so we can keep a roof over our heads and provide for our family,’ she said.
To make matters worse, Tommy recently had his daycare hours reduced after the centre said it was unable to manage staffing levels around his additional support needs.
To make matters worse, Tommy recently had his daycare hours reduced after the centre said it was unable to manage staffing levels around his additional support needs
Ms Schumacher says every day is a constant fight for Tommy’s safety and inclusion
NDIS have rejected the family’s claim for extra support hours for Tommy
‘NDIS won’t cover a support worker for the extra hours and now Tommy misses out. I honestly can’t believe this is how families are treated,’ Ms Schumacher said.
‘NDIS says Tommy’s support needs are the responsibility of early childhood services. Early childhood services say it is the responsibility of the NDIS.
‘Meanwhile, our four-year-old little boy is the one stuck in the middle, missing out.
‘This is not just a funding issue. This is a real child, a real family and real exhaustion.
‘Families should not have to fight this hard just for their child to be included.’
An NDIA spokesperson told Daily Mail that ‘the NDIS supports eligible children to build functional skills so they can take part in everyday life – at home, in early childhood settings, and at school.
‘Childcare services are part of the mainstream service system and childcare fees are not a NDIS funded support.
‘The NDIS does not fund the purchase of vehicles. The NDIS funds the modifications to a vehicle where these are required due to a participant’s disability needs.’
