Middle-ear disease

The Western Australian government announced last month that epidemic rates of chronic middle-ear disease and hearing loss are hampering education outcomes in the north-west.

The Education and Health Standing Committee tabled a report on absenteeism and literacy, and the impact of hearing on educational outcomes.

Prevalent middle-ear disease in the region is not a new problem - for any other illness and any other disability, funding would have been prioritized, but hearing loss and middle-ear disease is an invisible disability.

Funding is similarly invisible when it comes down to the specialist help these kids need to keep up with hearing teachers' expectations in mainstream hearing schools.

The rate of middle-ear disease in this region is one of the highest in the world, according to the World Health Organization and it isextraordinary that the problem, generally attributed to a lack of services and economic disadvantage, coexists with one of the most affluent mining areas in the world.

For the WA government the results, and some politicians' responses to them, were telling.

Ninety-four per cent of children in one lower-primary school had middle-ear disease or a related hearing loss.

The health minister proposed viable changes that would take six months to implement, but would not be introduced unless he was re-elected in March next year, relegating these sick children to being a political football.

In a hearing school system hearing-impaired students do not follow tuition as well as those who can hear and who are not chronically-ill.

Problematic non-attendance among 30% of the sick NW students, the media reported, added up to between two to five years of time off school.

Learning externally or home education present good options for kids with hearing loss and chronic middle-ear disease, and present logical alternatives to continued academic struggles and absences.

Without first-hand experience, the Committee members may not know that when a child has chronic ear-disease, the time when their pain is at its worst is when they try to go to sleep.

This sets up a lifetime of unusual sleeping patterns for those affected by middle-ear disease, making school attendance for them and their siblings quite difficult throughout periods of prolonged sickness.

When kids are up all night with unbearable ear pain, it disrupts the household, as a whole.

The sort of gnawing pain that accompanies chronic ear-disease is not effectively treated with the standard treatment for young children's pain, which is just paracetamol.

Sudden bursts of blistering eustachian tube pain, which my son and many other children with middle-ear disease have, causes infants and children to engage in prolonged, distraught crying.

Historically, the lack of interest among authorities regarding all aspects of service provision for long-term glue ear sufferers in society, impacts on Aboriginals worse.

Hot on the heels of the Redress Scheme, incredibly, one committee member even commented that a parent not sending their chronically-ill child into the classroom, was akin to abuse and the Department for Child Protection should "step in."

Discrimination experienced by people with a hearing loss, both systemically and directly, is such a common daily occurrence that they don't even bother talking about it.

Ear disease is intergenerational in my family and my friends' families, and some have tried to play down and cover-up their hearing loss, particularly as youngsters.

Last year, Becky, 10, during a bad bout of glue-ear, her principal decided the illness was something that DCP must have had a magic wand to cure – or perhaps it was her skin colour that was really at the heart of his hysteria.

Richard, 50, also had long-term glue-ear before he was stolen from home by DCP, tortured and abused in institutions, derided and vilified at school, and his disability completely ignored.

An apology from the PM was appreciated, but still Richard's outcomes remain tragic and unchanged.

Both Richard and his brother, Simon, were imprisoned at an early age, and juvenile sufferers are over-represented as victims of crime and offenders, in the criminal justice system.

Daniel, 20, was bullied at school, mostly by frustrated, busy teachers and despite being sent for re-education about Daniel's illness and hearing loss, the bullying continued.

His home-room teachers, each year, would authoritatively inform me he was not really hearing impaired and that he was just trying to trick them, because his fluctuating hearing loss meant that he could hear sometimes, but not all the time.

The invisibility of hearing loss can create stigmas for kids in school and they often get branded as troublesome.

These early, daily school experiences establish their lifelong patterns of poor self-esteem and poor educational outcomes from unsuitable learning environments.

Long-term glue-ear can cause multiple forms of hearing loss, some temporary, some permanent, and all fluctuate depending on the challenges present, like background noise.

The build-up of pus and mucus in the middle-ear impairs the hearing, and can burst your ear drums, which also causes some loss.

You can also get a subtle and tricky fluctuating loss from auditory processing disorder (APD) which is hard for others to detect and understand, and even harder to get properly diagnosed.

Long-term middle-ear disease also breaks down the little bones in your ear and a permanent loss in addition to other forms of hearing loss is likely.

Kids with glue-ear hear more efficiently when a speaker is facing them, but as soon as the speaker disappears from their line of sight it is far less likely that they will be heard.

Retention of anything that is heard, especially long, detailed dialogue, is very difficult.

APD slows the link between the ears and the brain and is not unlike the seven-second delay on talkback radio.

However, by the time APD sufferers have heard and understood what has been said, it has l-o-n-g passed and they've missed everything since then and cannot catch up without capturing lessons on a voice recorder to play back later.

Making the situation even more complex for educators, most APD testing does not realistically replicate normal challenges to hearing, like background noise, and so then the results are not realistic.

Support funding for students hinges on these results, and, at best, tests cannot provide an accurate measure of the fluctuating loss at any other point.

For Daniel, education support funding - even at a specialist deaf education unit, was scrapped for those with a fluctuating loss and APD, despite available room, staff and resources when his unit coordinator changed.

Consequently, he began tertiary education at 14, with intensive academic help at home because the large mainstream school classes were too noisy for him.

Due to continued poor health and long travelling distances he could not complete his course straight away, and his delayed developmental benchmarks further impacted on his impaired self-esteem.

Teaching Daniel to tenaciously deal with discrimination, bullying and adversity, was heart wrenching – the tears and desperation at the end of every school day were as wearing for me as they were for him.

He only once dared to dream about what he could be one day and that was while he was receiving educational support, surrounded by kids who were also hearing impaired and deaf.

Finally at 20, he is getting close to being able to go to university and fulfilling his early goal of being a doctor.

Research results consistently show in regional areas, infants and toddlers are worst hit with middle-ear disease, approximately 80-90%, and a marginal dissipation in rates is likely by the end of year seven.

Recent tests debunked more age-old glue-ear myths, proving the disease isn't limited by age and doesn't adhere to regional boundaries - almost 50% of Indigenous inmates at Perth's Bandyup Women's Prison were found to have middle-ear disease, and, at Alice Springs, that figure among male prisoners was an incomprehensible 95%.

Education, employment, health and social outcomes for sufferers of long-term chronic middle-ear disease will be poor if they are expected to use government services only appropriate for those who can hear. ###