JAN Barkell’s daughter Jemima has a whopping IQ of 150; making her clinically ‘highly gifted’ and more intelligent than 99 per cent of the population.
Jemima, who is 33 and an avid knitter, has extraordinary abilities to learn patterns, is an intuitive mathematician and can remember minute details of books and films. But despite her impressive memory and many skills, it’s the tasks most of us would consider the simplest that have Jemima stumped.
Putting out her rubbish, washing her dishes and vacuuming are next to impossible for her. When left unassisted her rental apartment is prone to becoming so dirty that mice faeces can be found in every draw, the dishes are sky-high and cockroaches make a home there. Considering Jemima lives in a block with seven other units, this is not only problematic for her but also her neighbours.
“They will have to evict her,” Jan says matter-of-factly.
“She’s aware that she’ll be evicted if that happens but that doesn’t translate to a change of behaviour … the brain can’t do that.”
Jemima has Asperger’s: an autism spectrum disorder that is characterised by poor communication skills, obsessive routines and physical clumsiness. She is unable to determine what should be thrown out, detests the feeling of hot water on her fingers and the piercing noise of a vacuum cleaner gives her a splitting headache. She knows that cleaning is important but simply cannot do it.
Until last month Jemima was helped by the Green Clean Team, an organisation that specifically caters to hoarders and people with autism. She had been receiving funding from the Department of Human Services since 2010 to pay the $50 weekly cleaning fee but at the end of April the funding will stop.
Jemima has since been placed on the disability support register to apply for an individual support package but exactly when that package will be assigned is anyone’s guess.
Indeed, a leaked government document obtained by Fairfax Media reveals the average wait on the register is two and a half years and funding isn’t allocated based on how long you’ve been on the list but how urgent a bureaucrat deems your needs.
If Jemima doesn’t receive funding soon the results could be devastating. She would likely be forced to move into Jan’s small, two-bedroom house and sleep on the couch.
Jan rents her second bedroom out to a university student for extra money and has chronic back problems, so she struggles to do housework herself.
The mother and daughter haven’t lived together since Jemima was a teen and Jan says her daughter has “has never successfully lived with another person”. Jan is petrified to think of the effects this would have on her daughter, who has a history of depression and self-harm.
Jemima’s story is a heartbreaking one, but unfortunately it is all too common. Workers in the disability sector say the current system is deeply flawed – the reason for the introduction of the National Disability Insurance Scheme.
But with the Abbott government hinting at a tough May budget and widespread speculation that the roll-out of the NDIS will be delayed, people with disabilities and their families are as desperate as ever.
Amicus - a disability support group based in Bendigo - chief executive Ann-Maree Davis explains that as it stands, people with disabilities have to apply to multiple agencies to have their needs addressed.
For example, Ms Davis says people who are paralysed from the waist down often have to apply to one service for help with showering, another for respite care and yet again another agency for their vital equipment, such as a wheelchair and equipment in the house. Getting to medical appointments poses further challenges – and the necessity to apply to a different funding body – and this doesn’t even take into account programs that aim to help people with disabilities integrate into the wider community.
Ms Davis says navigating this complex system often means filling out mountains of paperwork and requires individuals to detail their circumstances time and time again; a frustrating and overwhelming experience.
“People get their support through multiple buckets of funding and the system is often very confusing,” she says. “They find it frustrating to have to tell their story again and again.”
But she says the main problem is that there simply isn’t enough funding available.
“They (people with disabilities) often miss out on opportunities to get involved in the community,” Ms Davis says. “They only have enough funding to have their immediate personal care needs met.”
Regional Information Advocacy Council disability advocate Marie Whitrow, who has advocated on behalf of Jemima in the past, echoes Ms Davis’ calls, saying the current system is broken. While she won’t comment on Jemima’s specific case, she says there are many Bendigo residents who aren’t getting the help they need.
“There are people with a disability in your neighbourhood who are desperate for support because their needs aren’t being met,” she says.
“They can’t get the funds they require to have their basic needs met and live a life with dignity.
“Their unpaid carers are bone tired, sleep deprived and their physical and mental health has become fragile too.
“Many of these families have waited years for support and don’t know how many more years they can keep hanging on.”
Both Ms Whitrow and Ms Davis are adamant that the implementation of the National Disability Scheme should not be delayed. Ms Whitrow describes it as an “economic reform we can’t afford not to have”.
Ms Davis says that the scheme aims to co-ordinate various services much more efficiently. The idea is that people with a disability are assigned a case worker, who details their needs and applies to the government for funding. Once funding is granted – and workers are hopeful there will be a bigger pool from which to draw – the individual has the autonomy to decide which programs and services they employ and to choose one that best matches their needs.
In the case of Jemima Barkell, if she was allocated just $50 a week from the department, she could pay for the services of the Green Team Clean and continue to live in her apartment. As it stands, though, Jemima and her mother wait in limbo and their anxiety is taking its toll.
“The impact on my daughter’s mental health is terrible,” Jan says.
“She’s had the legs cut from under her.
“If you’re eligible for a service you should be provided with it.”