CHAPTER 4
THE IMPLICATIONS OF HEARING IMPAIRMENT FOR INDIVIDUALS AND THE COMMUNITY
Though endowed with a passionate and lively temperament and
even fond of the distraction offered by society, I was soon obliged to seclude
myself and live in solitude...if I appear in company I am overcome by a burning
anxiety, a fear that I am running the risk of letting people know my
condition...such experiences have almost made me despair, and I was on the point
of putting an end to my life – the only thing that held me back was my art.
Beethoven on his increasing deafness, Heiligenstadt Statement, 6 October
1802.
...[hearing loss] annoys me as I don't enjoy things as much.
Music is dull, going out is too much noise, eating and...socialising in cafes is
difficult, I miss the birds and the sound of the sea.
Ms Erica Smith, Submission 79, [p. 1].
Introduction
4.1
The committee heard about many implications of hearing impairment during
the course of this inquiry. Evidence about its effect on the lives of
individual people made a strong impression. Dozens of people shared their often
personal and emotional experiences, and the committee was deeply moved by their
passion and their courage.
4.2
What was less obvious, though in some ways just as powerful, was the
impact of hearing loss on the broader Australian community. Hearing loss can
lead people to isolate themselves and deny the rest of society their talents
and creative ideas. The lost productivity and revenue caused by early
retirement or under-employment is a tangible loss to all Australians, as was
discussed above in chapter three.
4.3
This chapter examines the personal, social, economic and other costs of
hearing impairment for individuals and the community in Australia.
The impact of hearing loss on individuals
Emotional and physical wellbeing
4.4
Evidence was presented to the committee that hearing loss can have a profound
impact on a person's emotional wellbeing. The particular impact differs
according to whether hearing loss occurs early or later in life, and its
severity.[1]
The common factor when considering the impact of hearing loss on individuals
appears to be its impact on people's capacity to communicate.
4.5
The committee received evidence about the psychological and other health
implications of hearing loss.[2]
The Department of Health and Ageing (DOHA) noted that the effects of hearing
loss can include isolation, depression, anxiety, paranoia, loss of intimacy and
anger.[3]
Whilst provision of hearing assistance devices and rehabilitation support can
mitigate negative experiences[4],
the committee is in no doubt that, as the University of Melbourne Audiology and
Speech Sciences put it:
...once a hearing loss reaches the severe level (a point where
people are unlikely to be able to use the telephone successfully), the effects
on vocational, social and educational activities are often truly devastating.[5]
4.6
Most evidence received by the committee was practical and constructive
in nature. A large quantity of evidence was also received which testifies to
the impact of hearing loss on individuals. The following statements are typical
of the range of very personal, emotional experiences shared with the committee
by hearing impaired Australians:
I have been profoundly deaf since the age of seven. I am now
seventy-one. During that time I have operated on the periphery of what goes on
every day, and I often feel confused and vulnerable. Due to my hearing
impairment, I cannot make accurate judgments about verbal events which affect
me constantly. In attempting to interact with people, I frequently experience
significant levels of stress, through not knowing if my judgment or responses
to situations are accurate, and if these judgments or responses are going to
result in adverse outcomes.[6]
It [hearing impairment] feels as though we're punished for
something that is out of our control...I certainly never asked to be hearing
impaired.[7]
The cost of hearing Impairment is great, but not in the
dollars, it’s with the individual. Can anyone put a price on the importance of
good hearing? Can you put a price on hearing your daughters, mother, fathers,
sons voices? Can you put a price on the feeling and complete loss?[8]
The experience of the loss of one's hearing is invariably a
negative one.[9]
I just stay home now and keep my garden. I don't go out
[because] I can't hear.[10]
4.7
One of the more confronting accounts provided to the committee was
included as a case study in Hearing Impaired and Deaf Kindred Organisation
Network (HIDKON)'s submission to the inquiry:
I am 35 years old and live in rural SA. Farming is a tough
slog at the moment. I can't hear well due to the years I have been around farm
machinery. It has damaged my hearing. I have significant tinnitus which impacts
on my communication and state of mind. I [can't] concentrate to do the [Business
Activity Statement] and my hearing loss means that I have difficulty when [I] attend
lectures to learn how. My GP sent me to an ENT, I had to drive 3 [hours] to
Adelaide all for him...to say there was nothing he could do. This left me on the
shelf...I tried to do the right thing and I have investigated hearing aids and
after paying for another hearing test...I found out they would cost a couple of
thousand dollars – at a minimum. I've gone down hill in the past year. I'm now
on antidepressants and anti-anxiety medication. I feel like I'm giving up. I
don’t go to meetings any longer, don’t attend church and avoid social
situations [because] I can't hear. Communication with my family is very
difficult and I know it is causing relationship breakdown. Sometimes it would
be easier to end it all...I learnt a few years back at a field day about noise
and hearing loss and now wear ear muffs all the time to protect them. But it's
too late.[11]
4.8
Several hearing impaired submitters commented on the difficulty they
have accessing public announcements,[12]
particularly where there are no visual clues to reinforce spoken announcements:
I cannot hear train announcements as when the person is
speaking the sound distorts and it sounds to me like Donald Duck. As a
consequence I have missed trains, gotten lost, and couldn’t use a phone to call
a cab to get home.[13]
One watches other passengers cocking their heads to hear the
announcements, then reacting (rolling their eyes or tut-tutting or making
mobile phone calls), and if one is confident, chooses a friendly-looking
passenger to ask their advice. (However, sometimes it feels risky to make...one's
hearing-impaired status known to strangers.) If there are no other passengers
in the carriage or station whom I feel comfortable approaching, I can only hope
the cause of the disruption is nothing life-threatening, and that the delay
will not be so long as to cause me to miss a critical appointment.[14]
4.9
The committee also received evidence that hearing impairment has an
effect on people around the person who is hearing impaired. The finding of one
study was quoted by Phoenix Consulting in their submission:
Hearing loss affects both the
individual who has it and those with whom he or she interacts. If the listener
is hard of hearing and does not understand what is being said, the person
speaking will also experience a communication problem. In the same way,
speakers, as well as listeners who are hard of hearing, share responsibility
for preventing or reducing communication problems related to hearing loss...(listeners)
cannot prevent or resolve communication problems by themselves; they often need
the co‐operation of those with whom they
communicate.[15]
4.10
Connect Hearing remarked on the way people without hearing impairment
perceive people with a hearing impairment in everyday life, noting that
individuals with hearing impairment can be variously considered 'stupid'
(because they answer questions incorrectly or respond inappropriately),
'senile' (among elderly due to lack of response or engagement), or 'aloof'
(perceived as arrogant when they don't respond).[16]
Or, in the words of Michael Uniacke: '...for most people, blind people arouse
concern, but deaf people arouse impatience'.[17]
4.11
Whilst the most common impacts of hearing loss on adult health are
social and emotional, hearing loss in adults is also associated with an
increased risk for a variety of physical health conditions including diabetes,
stroke, heart attack, and elevated blood pressure.[18]
4.12
Margaret Robertson noted in her submission a Swedish study which
reported findings from research into the association between hearing loss and
increased risk of other diseases:
Frustration, irritation and perceived inferiority in social
interactions were mentioned frequently by the subjects. The psychophysical
effects of stress are known to elevate output of stress hormones, leading to
increased risk of diseases.[19]
Employment
4.13
Access Economics has shown that people with a hearing loss are less
likely to be employed than other Australians.[20]
Furthermore, people with a hearing impairment in the workforce are 25 per cent
less likely to be earning higher incomes.[21]
This under-employment results in lost productivity, as noted already in chapter
three. Lost productivity costs will grow in the future. Australian Hearing
stated: 'The impact of hearing loss on workforce participation will become
greater as the population ages, and the pension entitlement age increases'.[22]
4.14
The broader economic implications of this were explored in chapter three
of this report, however the psychological and emotional burden of lower levels
of employment are part of the impact of hearing health on individuals.
4.15
One submitter remarked on this aspect of the impact of hearing loss that
'Having a hearing loss has meant that I can't work in my trained and
experienced field, therefore I have a lower paid job'.[23]
Another submitter commented that they also were no longer working at their
former level:
I cannot any longer take full part in meetings, undertake
lecturing or teaching or run community consultation, all work I used to do...I am
still in paid work but am only able to be so because of the patience and
consideration of my colleagues, and because I work in a quiet environment.[24]
4.16
The committee heard from one hearing impaired person that being willing
to work and study to improve their chances in life is not always enough:
It is hard to find jobs too when [you] have a hearing
impairment...I can't work in anything that requires the use of a phone, or face
to face customer interaction, and I'm even prevented from studying to broaden
my career aspects, due to the lack of interpreters available, so I miss out
greatly on getting anywhere in life. I have dropped out of 3 TAFE courses over
the years due to not being able to get enough interpreters. As a result, I have
no way of funding earmoulds or hearing aids when the need arises.[25]
4.17
Deafness Forum Australia commented on some of the barriers that might be
faced by employers wanting to engage hearing impaired staff:
...without adequate support in the workforce, why would an
employer hire someone with greater support needs, with greater costs to the
employer? For example, to bring in interpreters for weekly section meetings at
up to $120 per hour is a considerable expense for a small business, one which government
programs [do] not go far enough to cover. For meetings over 2 hours' duration,
two interpreters are required for OHS reasons, making a cost of up to $240 per
hour.[26]
4.18
The issue of early retirement or disengagement due to hearing loss was
raised by many people, and is central to Access Economics' 2006 economic
analysis of hearing loss in Australia.[27]
The following quotes from Deafness Forum Australia's submission to this inquiry
illustrate the human face of early retirement:
At the age of 46 I was in my office, I was having a
conversation with one of my PhD students, and I realised I was not hearing what
she said. It was quiet, I had my hearing aid up, I could not hear a lot of what
was being said. And so I thought, 'OK, this is time to retire'.[28]
I had to leave my job as I could no longer cope with
struggling to hear what was being said in meetings.[29]
4.19
It is recognised that employment provides people with the ability to
earn an income to support themselves and, importantly, employment provides a
sense of contribution, achievement and community. Submissions received by the committee
indicate that hearing impairment can have a considerable impact on a person's
working life, and is a key factor in the socio-economic impact of hearing loss.[30]
4.20
Access Economics outlines research which:
...suggests that people with hearing loss are on the margins of
the workplace and struggle to maintain their employment. Key problems include
equally participating in meetings, coping with background noise and discrimination,
keeping up to date with informal conversations, negotiating reasonable
communication accommodations and being able to participate in spontaneous but
critical workplace conversations.[31]
4.21
National Disability Services suggested that with the help of appropriate
technological assistance and the support that disability employment services
for people who are hearing impaired, challenges in the workplaces can be
overcome.[32]
However, further research is necessary to clearly identify the current
employment participation and economic productivity of people who are hearing
impaired, the extent of their difficulties within the workplace and,
subsequently, the development of innovative and effective ways to overcome
these challenges and ensure that the economic productivity of those who are
hearing impaired is improved.[33]
Imprisonment
4.22
The committee heard some evidence which suggests that people with a
hearing impairment experience higher rates of imprisonment than other
Australians.[34]
The causal relationship between hearing loss and criminal activity is that
hearing loss can impact on an individual's education, and importantly on their
language and behaviour development. These factors then become part of a complex
pattern of behaviours in individuals, sometimes including social dislocation
and high levels of unemployment, which may contribute to higher levels of
engagement with the criminal justice system.[35]
4.23
The particular criminal justice system issues affecting Indigenous people
with a hearing impairment are discussed in detail at chapter eight.
Children and education
4.24
It is crucial that children who have been diagnosed with hearing loss in
the early stages of life receive appropriate support and intervention if their
language and communication skills are to develop at a comparable rate to
children who do not have hearing impairment.[36]
It has been shown that children who have had their hearing impairment diagnosed
in their first six months develop language skills at 80 per cent of the rate of
non-hearing impaired children, compared to 60 per cent for children diagnosed
after 6 months.[37]
Early results of the Longitudinal Outcomes of Children with a Hearing
Impairment (LOCHI) study also show the importance of early intervention in
language and communication skills development later in life.[38]
4.25
Professor Richard Dowell remarked on the nature of language acquisition
for children who are born deaf:
For children born deaf they may never learn to speak
intelligibly and often do not develop language skills to a level beyond early
primary school...This is the real educational problem for hearing impaired
children – their language skills lag continually behind their hearing peers.
This gap grows over time such that very few are in a position to gain an
adequate secondary education.[39]
4.26
A number of parents of hearing impaired children told the committee that
they had worked hard to ensure their children acquired and developed language
and communication skills at a comparable rate with other children.[40]
4.27
The committee notes in chapter five that 95 per cent of children born
with hearing loss are born to parents who have no experience of deafness, and
who do not have a hearing loss themselves.
4.28
The committee received many submissions from educational experts and
parents on the range of pedagogical approaches for teaching deaf children in
Australia. Hear The Mums stated that the approach a family takes will depend on
their decision about the communication options they want for their child:
Parents initially need to decide the mode of communication
they believe is the most appropriate for their family and their child. The
choices that are generally made are Auditory-Verbal, Auditory-Oral, Auslan,
Total Communication or Bilingual – sign/spoken language. The mode of
communication chosen will then often determine the early intervention program
that the family will enrol in as most organisations specialise in providing a
specific type of intervention.[41]
4.29
The committee heard evidence that as technology is currently available
to allow the vast majority of children with severe hearing impairment the
ability to hear, it should be the first choice for hearing impaired children.
While the success of technologies such as cochlear implants is undoubted, other
witnesses argued that there should be an absolute choice for families.
4.30
Mr Christopher Rehn, Sydney Cochlear Implant Centre, commented that
while he supported funding for universal access to cochlear implants, the
decision for a child to have implants, requires families to fully understand
the procedures and outcomes. Mr Rehn went on to state:
We really do believe that in partnering up with the family
that the family make an informed decision and that informed decision is about
the choices for the child’s life, irrespective of what that looks like.[42]
4.31
Ms Leonie Jackson also argued that there was a need for choice and that
all options should be considered by families as 'there is no one size fits all
for hearing impaired children'. Ms Jackson stated:
It is my very strong belief that there is not one approach that
will suit everyone. As a country, we need to stop promoting that one approach
is better than another. We need to promote the fact that cochlear implants are
not necessarily better than hearing aids; nor is it the other way around, in
fact. All deaf children are individuals, so we need to think about what the
best fit for that child is. It may be that neither a cochlear implant nor
hearing aids are the best fit for that child; it may be better for them to
learn signing so that they are able to communicate.[43]
4.32
Mr Alex Jones provided the committee with this comment on the need to
focus on the individual child:
So it is about the approach and fitting best with each
individual. You cannot have one size fitting all. You cannot just close your
eyes and hope for the best; you absolutely cannot. You need to look at each
individual child and what their needs are, where they are living, how their
parents can support.[44]
4.33
Ms Jackson commented that perhaps hearing impaired children should use
both speech and sign language. However, it was noted that services are not
always available in schools and that some governments were not supporting the
use of Auslan in education. For example, Ms Kate Nelson, Deaf Society of NSW,
stated that the NSW education department 'is quite actively dismissive of
Auslan and they are focusing on mainstreaming deaf children'. In addition,
because of the advances in technology, many believe that Auslan is no longer
needed. Ms Nelson went on to argue that this will 'never happen' and that
children should be able to access the school curriculum via Auslan as
technology will not be the solution for all children.[45]
4.34
Ms Nelson noted that if specialist staff in schools do not have the
skills then language development, whether it be in English or Auslan, will be
further delayed. Ms Nelson commented:
As a deaf child, obviously your access to English is limited
or possibly nonexistent. Sign language is a more obvious language. It is a
visual language and it is the way you would be able to learn language. By
having a proficient level of sign language, Auslan, you are then able to learn
English. Later on in life, students have the choice of using either or both of
these languages. These children are falling through the gaps. That is probably
the best way of saying it.[46]
4.35
The Royal Institute for Deaf and Blind Children (RIDBC) drew to the
committee's attention changes in the training for teachers of deaf and hearing
impaired children. Whilst teachers need to know more about working with deaf children
than ever before, the RIDBC stated that the qualification requirements for
teachers have become less intensive and more generalised. Among other changes,
the number of hours of dedicated coursework required by trainee teachers of
children with hearing loss has declined from 325 in 1989 to 144 now.[47]
This does not compare favourably with international practice, as RIDBC
commented:
Notably in that same period of time, the average contact
hours dedicated to education of the deaf in programs in North America has
risen. The benchmark program at Washington University, for example, requires
660 contact hours and the program at York University in Canada requires 432
contact hours in deafness and hearing impairment related coursework.[48]
4.36
The committee received evidence that children who are hearing impaired receive
in-classroom support to participate in mainstream schooling, however there was
concern expressed that the availability of teacher's aides to assist these
children is not sufficient, and that children should be afforded more support.[49]
4.37
The social experiences of children with hearing loss in a hearing world
can be confusing and isolating, as several witnesses testified:
...it is heart breaking to see my [profoundly deaf] daughter
being excluded from conversations because it is so difficult [for her] to
understand through noisy situations, and situations where groups gather.[50]
I was
born with a hearing loss and fitted [with hearing aids] at an early age,
however going to a mainstream primary and secondary school meant there was a
lack of support to cope academically and socially. There was no education given
to other hearing students to understand and accept how to deal with peers who
have a hearing loss. Being the only one throughout my schooling days meant I
was constantly bullied and depressed.[51]
4.38
The impact of hearing loss on individual children was often raised by
witnesses and submitters. A frequent comment heard by the committee was that
people who suffered from undiagnosed hearing loss at school felt stupid or
dumb. The following description is typical:
[My hearing impaired son] would come home and tell me that he
was stupid...it was very emotional to have a 12-year-old kid tell you that they
are dumb, that they are stupid and that they should not be alive. That was my
experience but I have found out that it is also the experience in a lot of
other communities with children who have that. They come back and say that they
are dumb and they are stupid...He did not want to go to school. He thought the
teachers hated him. It was simply because they would yell at him when he did
not understand what they said, but they did not realise that the more they
yelled at him the less he understood. He was in a vicious cycle that made him
become depressed.[52]
Costs
4.39
The committee notes that the broader issue of economic costs to the
Australian economy are discussed at chapter three of this report. Whilst the
focus in this section is on the financial costs of hearing impairment to
individual people, some duplication was unavoidable.
4.40
Many submitters and witnesses raised with the committee the cost to individuals
of hearing impairment. Of particular concern was the lack of funding and
insurance options available to non-Office of Hearing Services (OHS) clients. Many
of the issues connected with eligibility for OHS services are dealt with in chapter
five of this report.
4.41
The cost of hearing aids is between $3,000 and $10,000 per pair.[53]
Many submitters remarked on the financial hardship caused by having to meet
these costs every few years. For example:
When I was unemployed and a student, I had to buy new hearing
aids for $8,000, and I had to get a personal loan to pay for it, and then I had
to go on Centrelink payments as well, because I had trouble paying my rent.[54]
4.42
The impact of these costs is particularly felt by young people, who are
often low income earners, as is neatly illustrated by this remark from a young
Canberra woman: 'My friends are saving up for an overseas trip. I am saving up
for my next hearing aids'.[55]
4.43
Some people commented on the perpetual strain of worrying about the cost
of replacing damaged hearing aids. In Ms Hilda Sutcliffe's words: 'I live in
fear of the day my hearing aids die and I can't afford to have them replaced'.[56]
4.44
Maureen from Victoria stated that the cost of buying new hearing aids
means she can only afford one aid, though she really needs two to hear well:
It is a recurrent cost every four to five years for the
replacement of a hearing aid. I really need two, but at $4,000+ for an aid, I
function on a single hearing aid, which I use for approximately 18 hours of
every day. Without the aid, I hear absolutely nothing as I have a severe to
profound loss, as a result of pre-lingual measles. Added to this is the cost of
batteries and it is expensive having to pay for having what is termed a
disability.[57]
4.45
Evidence was provided in connection to the high cost of maintaining and
replacing cochlear implant speech processors. This issue is discussed in detail
below.
Other costs of living for people
with a hearing impairment
4.46
Additional costs of living for people with a hearing impairment are not
limited to purchasing aids or processors. The following comment captures a
sense of the many other costs that non-hearing impaired Australians do not have
to factor into their lives:
I have 5 children all of whom have been afforded the same
educational and social opportunities...My deaf 21 year old son, however, must
always factor extra 'disability' costs into his life – he must always have
funds available for regular audiological and ENT assessment, hearing aid
maintenance and replacement, hearing aid batteries and essential safety
devices. It will always cost him more than his siblings to work 'normally'.[58]
4.47
The cost of maintaining hearing aids, including batteries, can also mount
up. These costs are subsidised for OHS clients, who pay a small annual
maintenance fee.[59]
For others, the costs of maintenance can be significant:
...batteries for the Cochlear Implant can be an expensive
item...Currently I use 3 batteries every 6 days and a packet of 4 batteries can
be up to $9 [$400 per year].[60]
4.48
Numerous submissions commented on the costs of hearing assistive devices
to individuals. The sorts of devices that people with a hearing impairment may need
day to day include specialised alarm systems, visual smoke alarms, teletype
phones, captioning decoders for televisions, visual doorbells, special alarm
clocks, and FM systems.[61]
Private Health Insurance and
hearing devices
4.49
People with a hearing impairment provided evidence to the committee that
some cover for hearing aids, including speech processors, is available under private
health insurance. Cover for hearing devices is available under some ancillary
(or 'extras') packages, and the level of cover varies according to the health
insurance provider and the level of cover taken out by the individual. The
committee also notes that private health insurance extras packages include some
level of cover on a range of health items in addition to hearing devices,
including such things as dental, optical and health management costs.
4.50
Numerous submissions commented that they perceived the level of benefit
available for hearing devices to be very low when compared to the costs. Mr Isaac Marcus
elaborated on this in his submission:
...[my] current level of health cover does not provide for
hearing aids. My private health insurer advises that the next level of cover
which provides for hearing aids costs an additional $40 per fortnight. The coverage
extends to $1,000 per hearing aid, with a three-year waiting period for making
a claim and three-year intervals. While the next level of cover also results in
some level of increases for other extras such as major dental, optical and
physiotherapy, the benefit for hearing aids does not justify the increase in
premium payments. An additional $40 per week over three years amounts to $3,120
for possibly claiming $2,000.[62]
4.51
Another submission remarked that the benefits payable for hearing
devices under private health insurance do not justify the cost of premiums:
...we have a drought-stricken farm and [hearing aids are] just
another cost we simply have to shoulder. Private health insurance for hearing
aids makes it very hard to claim on extra benefits, and so little is paid back
we didn’t even bother trying.[63]
4.52
DOHA advised the committee that private health insurers are under no
obligation to provide cover for hearing aids. Private health insurers may offer
some coverage for hearing aids, however the amount of cover is a decision for
the insurer.[64]
4.53
There are some circumstances where the private health insurer has an
obligation to provide coverage for cochlear implant speech processors, such as
when the processor was provided as part of a hospital treatment which was
covered by the private health insurance policy. However in other circumstances
any coverage of processors will depend on a person's insurer and the level of
cover they have taken out.[65]
The impact of hearing loss on communities
4.54
It was noted above that hearing impairment affects a person's ability to
communicate, and the impact of this for individuals can affect their mental and
physical wellbeing. The impact on the broader Australian community is also
great, as measured by reduced contribution and increased reliance on social
welfare support.[66]
4.55
As has been mentioned above, the economic impact of hearing loss on the
broader community has been estimated by Access Economics at nearly $12 billion
per year. This cost was reckoned in terms of lost earnings due to early
retirement and workplace separation, cost of carers, foregone taxation revenue,
health system costs, education support and aids, and increased reliance on
social welfare.[67]
The 2003 Disability Census suggests that 81 per cent of people with a hearing loss
receive welfare benefits.[68]
4.56
Evidence before the committee is that one effect of people with hearing
loss withdrawing from socialising and employment is that the community as a
whole could be missing out on their contributions: 'Systematic exclusion of
people who cannot hear from Australian society means that we all miss out on
the potential contributions of these talented individuals...'[69]
4.57
The level of awareness about hearing loss among both people with a
hearing impairment themselves and all Australians is low. As Better Hearing
Australia commented in their submission:
Despite being the most widespread disability in the
community, hearing loss is also the most misunderstood by the many Australians
who have a hearing loss. Far too many hearing impaired Australians simply do
not know or take the trouble to discover the support services that are
available to help them. Rehabilitation services and assistive listening devices
can greatly improve quality of life and assist in managing hearing loss.
Families, friends and colleagues are also often unaware of the implications
and damaging effect of hearing loss.[70]
4.58
Australian and New Zealand Parents of Deaf Children (ANZPOD) noted the
impact hearing impairment can have on family members:
Hearing impacts on the whole family not just the individual
with the loss. There is a higher level of marriage breakdown where parents are
dealing with the emotional and financial implications of raising a child with a
disability. Similarly siblings of children with a hearing loss often resent the
extra time and attention provided to their sibling which can lead to
behavioural issues.[71]
4.59
Several submitters provided the committee with a copy of the prose piece
'Welcome to Holland' by US writer Emily Perl Kingsley. The piece was written
about the author's experience with her son Jason, who was born with Down
Syndrome, yet many submitters felt that it could just as easily apply to
families of a baby diagnosed with a hearing loss. 'Welcome to Holland' is
reproduced in full below.
|
Welcome to Holland
By Emily Perl Kingsley
I am often asked to
describe the experience of raising a child with a disability - to try to help
people who have not shared that unique experience to understand it, to
imagine how it would feel. It's like this......
When you're going to have a
baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch
of guide books and make your wonderful plans. The Coliseum. The Michelangelo
David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager
anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says,
"Welcome to Holland."
"Holland?!?" you
say. "What do you mean Holland?? I signed up for Italy! I'm supposed to
be in Italy. All my life I've dreamed of going to Italy."
But there's been a change
in the flight plan. They've landed in Holland and there you must stay. The
important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different
place.
So you must go out and buy
new guide books. And you must learn a whole new language. And you will meet a
whole new group of people you would never have met.
It's just a different
place. It's slower-paced than Italy, less flashy than Italy. But after you've
been there for a while and you catch your breath, you look around...and you
begin to notice that Holland has windmills... and Holland has tulips. Holland
even has Rembrandts.
But everyone you know is
busy coming and going from Italy...and they're all bragging about what a
wonderful time they had there. And for the rest of your life, you will say
"Yes, that's where I was supposed to go. That's what I had
planned."
And the pain of that will
never, ever, ever, ever go away...because the loss of that dream is a very
very significant loss. But...if you spend your life mourning the fact that
you didn't get to Italy, you may never be free to enjoy the very special, the
very lovely things...about Holland.
Provided by North Shore Deaf Children's Association, Submission
39. |
4.60
Many submissions referred to hearing impairment as an 'invisible'
disability in that, unlike the vision impaired or the physically disabled,
hearing impairment is not obvious to the casual observer. However Deaf Children
Australia argued that the 'invisibility' of people with a hearing impairment in
the Australian community may result in part from lack of effort by the hearing
community to engage:
It would appear that exclusion of people with a hearing loss
is implicitly accepted as part of Australian community life. For example:
Federal state and local Governments continue to produce information on DVDs
without captions, Parliaments meet without ongoing provision for interpreters
and most mainstream community events are neither Auslan interpreted or captioned.
Other examples include public transport systems failing to address the fact
that people standing on the train platform may have a hearing loss and
therefore not hear public announcements and cinemas not allowing the screening
of captions. All of these are simple examples of the widespread community
exclusion of people with a hearing loss. The exclusion of children, young
people and adults with a hearing loss appears to be widely accepted and
endemic.[72]
Committee comment
4.61
The committee understands that with hearing impairment projected to grow
along with Australia's ageing population, it is crucial to make changes now
that will improve the way people with a hearing impairment are supported before
the system has to manage the increased volume of demand for services and
support.
4.62
The committee was moved by the individual experiences which hearing
impaired Australians shared during this inquiry. Their sense of disempowerment
and isolation came through clearly from the evidence.
4.63
The committee was concerned at the psychological and other health
impacts of hearing loss for Australians, and accepts that the ability to
communicate with others is central to a person's health and wellbeing.
4.64
The committee heard about the different approaches to communication and
education available for children with severe hearing impairment, and believes
that it is important that parents be informed about what those choices are, and
will be equally supported regardless of the choice they may make for their
child.
4.65
The committee is concerned at evidence about a decline in training
standards for teachers of children with hearing loss, and agrees with the RIDBC
that a more sophisticated understanding of hearing loss education should be
reflected in specialist teacher preparation programs. The committee believes
that there is a need for agreed Australian national qualification standards for
teachers of children with hearing impairment, and these should be benchmarked
against international best practice.
4.66
The committee is concerned by evidence which suggests that children with
hearing impairment in mainstream classrooms may not be receiving adequate
levels of in-class support. It would be valuable for states and territories to
review support arrangements, to ensure children in mainstream classrooms are
given every chance of success.
4.67
The committee notes the tremendous effort required by families seeking
to support their children successfully through their education and on to
fulfilling lives.
4.68
The committee notes that hearing loss may lead to higher engagement with
the criminal justice system. Recommendations have been made in chapter eight around
this issue.
4.69
Hearing impairment results in a cost burden for some members of our
society, often at very vulnerable points in their life. Private health
insurance cover is not enough to completely offset the high cost of hearing
devices, which need replacing regularly. The committee has made recommendations
in chapter five which aim to expand access to Australian Government Hearing
Services Program support.
4.70
People with a hearing impairment leave the workforce earlier, earn less
money, and are more likely to be unemployed than people without hearing
impairment. The committee notes that the largest economic cost of hearing
impairment is due to lost productivity. The committee believes that the
Australian Government is well placed to lead development of a long term policy
that seeks to better support people with a hearing impairment in the workplace,
to the benefit of all Australians.
Recommendations
Recommendation 2
4.71
The committee recommends that the Department of Education, Employment
and Workplace Relations engage with state and territory jurisdictions, and with
employment and hearing loss peak bodies, to develop a 10 year strategy to better
support, engage and retain hearing impaired Australians in the workforce. The
strategy should be made publicly available, and detail annual performance
targets and the level of resources committed to achieving them.
Recommendation 3
4.72
The committee recommends that the Department of Education, Employment
and Workplace Relations engages with state and territory education systems,
higher education providers of training for teachers of children with hearing
impairment, and major stakeholders (including the Royal Institute for Deaf and
Blind Children and parent representative bodies), to develop and implement an
agreed national qualification standard for teachers of children with hearing
impairment. This standard is to be benchmarked against international best
practice.
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