identifying australians who live with deafblindness and dual sensory loss

Identifying Australians who live with deafblindness and dual sensory loss

A Clear View

www.senses.org.au

Prepared for Senses Australia by Paula Dyke, July 2013

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A Clear View | Identifying Australians who live with deafblindness and dual sensory loss

About the Author

Paula DykePaula Dyke originally qualified as a physiotherapist and has spent the last 30 years working initially as a clinician and manager of large allied health teams before completing her Master’s degree in Public Health in 1999. Since that time her interest has been in research and evaluation within the disability sector. Over the last seven years, Paula has undertaken a wide variety of evaluative and research consultancy work for a range of organisations including Curtin University of Western Australia, Uniting Care West, Disability Services Commission of Western Australia, Activ, The Centre for Cerebral Palsy and The Telethon Institute of Child Health Research. Paula has extensive qualitative and quantitative research skills, well established project management skills and has lectured undergraduate medical and allied health students in both epidemiology and research methods. Paula has also written a number of reports and has had her work published in internationally peer reviewed journals including the Journal of Intellectual and Developmental Disability, Acta Paediatrica and Academic Medicine.

This work is copyright. Except as is provided below, Senses Australia reserves and withholds all intellectual property rights.

Senses Australia hereby grants you a non-exclusive, perpetual licence to broadcast, lend and distribute this work for training or educational purposes subject to Senses Australia being acknowledged as the source.

Apart from any use permitted under the Copyright Act 1968, you must not make any other use of this work including copying, hiring, lending, duplication, distribution, reproduction or on-selling, of this work, without the prior written consent of the Senses Australia.

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ContentsExecutive Summary ii-ix

1. Background to the Project 01

2. The Literature 02

2.1 Congenital deafblindness 06

2.2 Acquired Deafblindness 12

3. Methodology 20

3.1 Survey of Disability, Ageing and Carers 20

3.2 Disability Services National Minimum Data Set 23

3.3 Definitions 24

4. Results 26

4.1 Age and Gender 27

4.2 Geographical location 30

4.3 Core Activity Limitation 33

4.4 Long-term health conditions 41

4.5 Living Arrangements 43

4.6 Carer Characteristics 48

4.7 Support needs 51

5. Discussion and Key Findings 58

6. References 70

7. Appendices 75

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A snapshot of the key findings.

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Executive SummaryIndividuals who have a combined sensory disability of vision and hearing loss face a number of challenges not experienced by others with different types of disability. The impact of a concurrent sensory impairment on a person’s life is considered to be more severe than that of two separate single impairments. The prevalence of deafblindness has been described as difficult to ascertain and often underestimated. In 2009 in Australia, findings from the Survey of Disability, Ageing and Carers (SDAC) indicated that 87,164 people reported having ‘diseases of the eye and adnexa’ as their primary disability and 305,074 people reported having ‘diseases of the ear and mastoid process’ as their primary disability. Similarly in Western Australia (WA), 9,940 people reported having ‘diseases of the eye and adnexa’ as their primary disability and 31,731 people reported having ‘diseases of the ear and mastoid process’ as their primary disability.1 There is no report of the estimated number of people who are deafblind in either WA or Australia.

This project and resulting report builds on initial work by the Senses Foundation, completed in 2007, to identify demographic characteristics of those who were blind with additional disabilities and people who were deafblind throughout Western Australia. It focused on obtaining a picture of the demographic characteristics and service needs of those with a dual vision and hearing impairment within WA and across Australia. The specific aims of the project were to identify:

n the number of individuals with a dual sensory disability of vision and hearing loss within WA and across Australia;

n the age and gender of these individuals;

n the geographical distribution of these individuals, with a specific aim of ascertaining the number of individuals living in rural and remote areas of the country; and

n the degree of activity and participation limitations for the target group.

1Australian Bureau of Statistics (ABS) Disability, Ageing and Carers, Australia: Summary of Findings 2009. 2010 Available at http://www.abs.gov.au/ausstats/abs@nsf/0/

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The methodology involved using existing population based statistical data to determine the key outcome objectives related to the target population. The primary source of data was the 2009 Survey of Disability, Ageing and Carers. Senses Australia used the Australian Bureau of Statistics consultancy service to produce data, from the 2009 SDAC, specific to the target group. The secondary data source was the Disability Services National Minimum Dataset (DS NMDS), as presented in a report produced by the Australian Institute of Health and Welfare for the 2009-10 period.2

The results of this project produced eleven key findings related to those with a dual sensory impairment of vision and hearing loss living in both WA and Australia. The results from the data analysis produced more extensive information than the original project aims, providing some additional information related to carers of those with a dual sensory disability along with some detail regarding the need for assistance in a range of broad activity tasks.

Key Finding 1In 2009, an estimated 7,900 Western Australians and 99,800 Australians had a dual sensory disability of loss of vision and loss of hearing. The target group made up 0.35% and 0.5% of the resident population for WA and Australia respectively.

2Australian Institute of Health and Welfare ( AIHW). Disability Support Services 2009-10. Canberra; 2011.

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Key Finding 2Individuals with a primary disability of deafblind made up 0.2% (n = 679) of all users of disability support services.

Key Finding 3For both WA and Australia, overall there was a greater proportion of women than men reporting having the dual sensory disability of loss of vision and loss of hearing. However in the younger age groups more males than females reported having this disability type. Up to two-thirds of people in this target group were the elderly, aged 75 years and older (62% in WA and 67% in Australia).

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Key Finding 4Similar proportions of males and females with a primary disability of deafblindness were users of disability support services. Those 65 years and older made up 20% (n = 140) of deafblind service users compared with 6% (n = 18,006) of all disability support service users in this age group.

Key Finding 5Approximately a third (n = 38,100 in Australia, n = 2,400 in WA) of people with diseases of the eye and adnexa and diseases of the ear and mastoid process live in regional and remote areas of Australia. In both Australia and WA more males than females with diseases of the eye and adnexa and diseases of the ear and mastoid process live in regional and remote areas.

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Key Finding 6The degree of activity and participation limitations among those with the dual sensory disability of vision and hearing loss increased with age and was greatest among those aged 75 years and older both within WA and Australia. Only an estimated 4.2% (n = 4,200) of people with loss of hearing and loss of vision reported having no specific limitation in core activities. Over half (61%, n = 60,800) of those with loss of vision and loss of hearing in Australia reported a profound or severe core activity limitation and almost a third a moderate or mild core activity limitation.

Key Finding 7In Australia, labour force participation rates were lower for males with loss of sight and loss of hearing than those for all males with disabilities (47.2% compared to 60% respectively) and for females in the target group compared to all females with disabilities (28.2% compared to 49% respectively).

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Key Finding 8For those over 60 years with diseases of the eye and adnexa and diseases of the ear and mastoid process more than three quarters of people reported living in private dwellings in both WA and Australia. In Australia, 40% (n = 35,800) of those with diseases of the eye and adnexa and diseases of the ear and mastoid process who lived in private dwellings had profound or core activity limitations compared to almost all (97%, n = 20,600 ) of those living in non-private dwellings.

Key Finding 9There is an estimated 700 carers of people who have diseases of the eye and adnexa and diseases of the ear and mastoid process in WA and 17,000 primary carers of the target group across Australia.

Key Finding 10In WA the primary carers of people who have diseases of the eye and adnexa and diseases of the ear and mastoid process are all women, however across Australia a third of carers of the target group are males (33%, n = 5,700).

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Key Finding 11Just over half (n = 8,900) of primary carers of persons with diseases of the eye and adnexa and diseases of the ear and mastoid process spend 40 hours or more per week in the caring role.

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1. Background to the Project

A Clear View was commissioned by Senses Australia in 2013.

In 2013, Senses Foundation converted from an incorporated association to a

company limited by guarantee, called Senses Australia, in order to take advantage of new

opportunities opening up within the National disability agenda. Senses Australia will use

the results of this project to assist in determining the specific service needs of

individuals who are deafblind and people who have a dual sensory disability of vision

and hearing loss in WA and Australia along with providing direction in terms of

future strategic planning, policy change and development and planning of the

provision of services.

In 2004, the Senses Foundation undertook a major review of its strategic direction

and in doing so refined the definition of its clients, their geographical distribution

and their age from the very narrow focus which it held previously to a considerably

larger target population. This refining of the target population saw a shift to include

the provision of services to people from birth to death and changes in eligibility for

services to include persons who may be congenitally deafblind or acquire a dual

vision and hearing disability as a result of disease, injury or ageing.

In beginning to implement the new strategic plan, Senses Foundation was unaware

of the number of people in Western Australia (WA) who were likely to fall within

their new broader target population. As a result Senses Foundation conducted their

own research, using a Research Consultant and the Australian Institute of Health

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and Welfare (AIHW) to identify demographic characteristics of those who were blind

with additional disabilities and people who were deafblind throughout Western

Australia. This work resulted in a report known as ‘Unseen and Unheard: The

identification of people who are deafblind and people who are vision impaired with

additional disabilities in Western Australia’.1

This project and resulting report, A Clear View, builds on the initial work completed in

2007, to obtain a picture of the demographic characteristics and service needs of those

with a dual vision and hearing impairment within Western Australia and across Australia.

The specific aims of the project were to identify:

• the number of individuals with a dual sensory disability of vision and hearing

loss within WA and across Australia;

• the age and gender of these individuals;

• the geographical distribution of these individuals, with a specific aim of

ascertaining the number of individuals living in rural and remote areas of the

country; and

• the degree of activity and participation limitations for the target group.

2. The Literature

Four million people in Australia (18.5%) reported having a disability in 2009, with

males and females being similarly affected by disability (18% and 19% respectively).2

Disability is defined as any limitation, restriction or impairment, which has lasted, or

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is likely to last, for at least six months and restricts everyday activities. 3 The

prevalence of disability has fallen 1.5 percentage points since 2003, that is, 20% of

Australians in 2003 had a reported disability compared with 18.5% in 2009. The

Australian Bureau of Statistics (ABS) states that the decrease in the prevalence of

disability between 2003 and 2009 is due to a decline in the proportion of Australians

disabled by physical health conditions such as asthma and heart disease. 2

In 2009 in Australia, findings from the Survey of Disability, Ageing and Carers (SDAC)

indicated that 87,164 people reported having ‘diseases of the eye and adnexa’ as their

primary disability and 305,074 people reported having ‘diseases of the ear and mastoid

process’ as their primary disability. Similarly in WA, 9,940 people reported having

‘diseases of the eye and adnexa’ as their primary disability and 31,731 people reported

having ‘diseases of the ear and mastoid process’ as their primary disability. 2 There

is no report of the estimated number of people who are deafblind in either WA or

Australia.

Individuals who have a combined sensory disability of vision and hearing loss face a

number of challenges not experienced by others with different types of disability. The

impact of a concurrent sensory impairment on a person’s life is more severe than that

of two separate single impairments. 4 In the United States (US), where most of the

research on people who are deafblind has been carried out, the legal definition of

blindness is vision acuity for distant vision 20/200 for the better eye.5 The World

Health Organisation (WHO) defines deafness as a permanent unaided hearing

threshold for the better ear of 81dB for the 0.5-2kHz range. cited in 5 Researchers and

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professionals in the field of sensory impairment consider that an individual

demonstrates deafblindness when the hearing loss in the better ear is >35 decibels,

and the reduction in vision is <0.3 (equivalent to <20/60).4

The Australian DeafBlind Council defines deafblindness in the following way:

‘Deafblindness is a unique and isolating sensory disability resulting from

the combination of both a hearing and vision loss or impairment which

significantly affects communication, socialisation, mobility and daily

living’ 6, p.12

The prevalence of deafblindness has been described as difficult to ascertain and often

underestimated. 6,7 Difficulties determining prevalence has been attributed to

inconsistent definitions of deafblindness; difficulties in assessing sensory functioning

in persons with severe cognitive and behavioural issues; inappropriate placement of

many deafblind persons in programs designed for other populations of disabilities (for

example, autism) and underestimation of self-reported measures of concurrent vision

and hearing impairments amongst the aged. 8,9 Until recently, from both a national

and international perspective, the population of deafblind has received little attention

in the literature. The topic of dual sensory disability and its rehabilitation, has been

the focus of increasing research and commentary in large due to the rapidly increasing

numbers of older adults with vision and hearing impairment.10

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Individuals with dual sensory loss have been described as being classified into three

categories: those with congenital or early postnatal vision and hearing impairments;

those individuals with a congenital or early postnatal impairment in either vision or

hearing and acquired dual sensory impairment through late-onset changes; and those

who develop a dual sensory impairment in adulthood through the onset of age related

changes or age related disease to sensory organs.11 More commonly, those who are

deafblind are described as having congenital deafblindness or acquired deafblindness.

Recent research has highlighted the significant differences between those who are

congenitally deafblind and those with acquired deafblindness. Differences in living

arrangements, marital status, communication modes and employment status have

been found with those with acquired deafblindness more likely to be married, live in

private dwellings, be employed and communicate with speech. 9 Persons with

congenital deafblindness have multiple challenges in the functions of communication,

social interaction, mobility and activities of daily living. Those with acquired

deafblindness also have a unique set of issues that are often dominated by social

isolation, feelings of loneliness and depression from adjusting to loss of life roles.9

Despite an increase in the cited literature related to dual sensory disability, there

continues to be a paucity of literature and well-designed research on both the

epidemiology of deafblind disabilities and effective assessment, interventions and

outcomes. The remainder of this section of the report will highlight the relevant

literature sourced related to the epidemiology and aetiology of deafblindness.

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2.1 Congenital deafblindness

Congenital deafblindness is related to several aetiologies, including several rare

hereditary syndromes. The overall prevalence of congenital deafblindness in children

is estimated to be 1:19,000 and is lower among adults where estimates are 1:34,000.8

The aetiology of congenital deafblindness has been classified into hereditary causes;

pre-natal, peri-natal and post-natal causes and unknown or undetermined causes.

The results from three aetiological studies on congenital deafblindess in children are

detailed below, indicating a dominance of hereditary and chromosomal causes and

unknown or undetermined causes.

Table 1: The aetiology of congenital deafblindness as described in three studies:63 children in Denmark with deafblindness aged 0-18 years 8, the 2007 national child count of 10,174 individuals 0-21 years 12 and the study of 57 deafblind pupils. 13

Aetiology Dammeyer (2010) The 2007 National Child Count (The National Consortium on Deaf-blindness,2008)

Admiraal and Huygen (2000)

% (n)

Hereditary 49 (31) 35 (3607) 31 (18) Pre-natal 3 (2) 18 (1836) 40 (23) Peri-natal 16 (10) 12 (1194)* 11 (6) Post-natal 8 (5) 15 (1525) 2 (1) Unknown/Undetermined 24 (15) 20 (2012) 16 (9) Total 100 (63) 100 (10174) 100 (57)

*In study, was named complication of prematurity

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The aetiology of congenital deafblindness has changed over the years primarily due

to advances in medicine and medical technology. Immunisation programs for rubella

virus have almost eliminated maternal rubella as a cause of congenital deafblindness

in developed countries. Further, the improved medical procedures for retinopathy of

prematurity is considered by some in the field as likely to reduce the incidence of

congenital deafblindness. 14 The most common causes of congential deafblindness

in children are reported to be CHARGE syndrome and Usher syndrome.8

CHARGE syndrome has an estimated prevalence of affecting one in ten thousand

children.15 It is an autosomal dominant disorder with mutations in the gene CHD7

being identified as causative for CHARGE syndrome in approximately two thirds of

children with this clinical diagnosis. The acronym CHARGE is based on the clinical

features identified when the syndrome was delineated in 1981: Coloboma, Heart

malformation, choanal Atresia, Retardation of growth and /or development, Genital

anomalies and Ear anomalies. Since that time, new frequent clinical findings have

been added to the clinical spectrum of CHARGE syndrome, such as dysmorphic

features, rhombencephalic dysfunction, hypoplasia of the semicircular canals and

arhinencephaly.15,16 The majority of children with CHARGE have a vision and hearing

loss along with balance problems that delay both their overall development and

communication. 17

Usher syndrome is an autosomal recessive genetic disorder and is characterised by

congenital moderate to profound hearing loss, a progressive loss of vision from a

disorder known as retinitis pigmentosa and vestibular dysfunction. Clinically, Usher

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syndrome has typically been classified into three types, each type manifested by

differing clinical presentations of the three core affected areas of the body. Types 1

and 2 are the more common types of Usher and Type 3 is considered the rarer form

of Usher syndrome with the exception being in Finland and Ashkenazi Jewish families.

Usher syndrome has been found to involve multiple genes and therefore is not

considered a ‘single gene mutation’. To date, 12 Usher syndrome loci have been

described and nine causative genes identified. 18,19,20

Usher syndrome is estimated to affect between 3 - 6.2 per 100,000 people in

developed countries. Recent research carried out in the US, highlighting the

prevalence of Usher syndrome reported that ‘Usher syndrome is more prevalent than

has been reported before the genome project era’. 21 (p.513) This work found that the

population prevalence for Usher syndrome was estimated to be 1 in 6,000 individuals.

Prenatal exposure to maternal infections such as toxoplasmosis, rubella and

cytomegalovirus can result in congenital deafblindness. While rubella is almost

eliminated from developed countries, both toxoplasmosis and cytomegalovirus are

reportedly on the increase as a cause of congenital deafblindness. 22,23 Congenital

toxoplasmosis (CT), transmitted transplacentally from mother to fetus can have

serious effects in infected, untreated children at varying times in their lives. It is

estimated that between 400 and 4,000 infected children are born each year in the US

and are likely to have severe recurring and progressive visual symptoms, seizures, as

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well as hearing, motor and cognitive impairments. 23,24 In Australia there is limited

data related to the incidence of unborn babies being infected with toxoplasmosis,

although it is considered to be relatively rare.

Congenital Cytomegalovirus (CMV) infection is the most common intrauterine infection

in the US, with the live birth prevalence being 0.6-0.7% in the developed world.25 Of

those infected, 10% are symptomatic as neonates however greater than 90% develop

long term neurological sequelae including sensorineural hearing loss, intellectual

disability, cerebral palsy and impaired vision from chorioretinitis. 25,26 One of the most

important risk factors for primary CMV infection during pregnancy is prolonged

exposure to young children since CMV infected children will secrete virus in the saliva

and urine for an average of 24 months. This is thought to place those women with

children in day care as well as women of child bearing age working in day care facilities

at an increased risk of primary CMV infection during pregnancy. 26 Recent research

in Australia collected national data from across Australia via the Australian Paediatric

Surveillance Unit with monthly reporting by more than 1000 clinicians between

January 1999 and February 2009. It was found that congenital CMV infection is under-

reported in Australia with it being estimated that approximately 240 infected infants

per year will develop permanent sequelae. 27

“Based on a live birth rate of 285,000 per year in Australia, and a CMV

birth prevalence of around 0.64%, the predicted incidence is about

1800 infected infants per year, which is substantially more than the

national rates of 5-25 cases per year. Critically, most of these infected

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infants will be asymptomatic at birth and are unlikely to be identified

without screening.’’ 27, p.628

Endemic transmission of rubella in the US was declared to be eliminated in October,

2004, on the basis of evidence showing high levels of vaccine coverage and population

immunity. 28 Rubella is of public health significance as when acquired in the first

trimester of pregnancy it is associated with spontaneous abortion or, in survivors, with

abnormalities of congenital rubella syndrome (CRS) in up to 80% of cases. These

include cataract, retinopathy, deafness, heart defects and neurological deficit. 29 In

Australia, the successful control of rubella through immunisation programs is reported

as rubella notification rates remain at very low levels. 28 However, there is evidence

to suggest that Indigenous women living in rural and remote areas of Australia have

inadequate immunity to rubella. 30 There is also concern that migrants from areas

without established rubella vaccination programs, particularly Asia, South America and

sub-Saharan Africa, are at greater risk of not being immune to rubella than the general

Australian population.31

Aetiologies of maternal alcohol and drug addiction and pre and post-natal trauma such

as hypoxia and prematurity are also associated with congenital deafblindness.32

Advances in perinatal care over the last three decades have resulted in improved

survival rates of preterm infants and extremely pre term infants. However, this has

resulted in an increase in the incidence of major neonatal diseases causing significant

morbidity. Long-term studies indicate these children have higher vulnerability in

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several developmental domains including somatic growth, learning abilities, behaviour,

motor performance and sensory domains.33-36

Retinopathy of prematurity (ROP) is responsible for up to 15% of all causes of

blindness in developed countries with the most common risk factor being the degree

of immaturity measured by birth weight and gestational age and prolonged exposure

to supplementary oxygen.37 It is suggested that the incidence of severe ROP may be

decreasing primarily due to improved management of respiratory distress syndrome.

However, this is disputed by some in the field who describe damage to the visual

pathways by lesions such as periventricular leucomalacia is an even more important

cause of vision impairment in the very preterm.38 In addition, a review of the

epidemiological data and causes of deafness found that very low birth weight as a

result of less than 25 weeks gestation ranks as the fifth or sixth most identifiable cause

of permanent hearing loss, comparable to cytomegalovirus.22

According to the AIHW, over the twelve-month period in 2010, 299,563 babies were

born in Australia of which:

8.3% were pre-term, with most births occurring at gestational age of 32-36

weeks (6.6%). A small proportion of mothers gave birth at 20-27 weeks (0.8%)

or 28-31 weeks (0.8%); and

there were 18,522 (6.2%) live born babies considered ‘low birth weight’ (that

is, less than 2,500 grams). There were 3,120 very low birth weight (less than

1500 grams) babies, constituting 1% of live births and 1,396 extremely low

birth weight (less than 1000 grams) babies, constituting 0.5%.39

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In WA, in 2010, 31,266 infants were born alive with the percentage of low birth weight

babies being 6.6 % (n = 2062). The percentage of low birth weight babies born to

Aboriginal mothers (13.9%) in 2010 was more than twice the percentage of low birth

weight babies born to non-Aboriginal mothers (6.2 per cent).40

2.2 Acquired Deafblindness

Acquired deafblindness can result from infections such as meningitis and encephalitis;

brain tumour; head injury; trauma and ageing. There was little literature found that

described deafblindness specifically related to these conditions with the exception of

ageing. The dual disability of loss of sight and loss of hearing in the elderly has

received increasing attention in the literature and will be the focus of this section of

the report.

The increasing life expectancy and increasing numbers of older people, particularly in

developed countries, means increasing individuals will be faced with a dual sensory

disability. The proportion of the US population aged 65 years and older will double

between 2000 and 2030, from 35 to 72 million.41 In Australia, the proportion of those

aged 65 years and older is expected to rise from 13% in 2006 to 26% by 2050.42 As

a result there has been an increasing focus on ageing and dual sensory impairment in

the literature and a recognition that now, by definition, the elderly with a vision and

hearing loss are being acknowledged as deafblind.6,7,43 Previously this was not

recognised as a distinctive disability type in the aged and many assumed it to be an

inevitable and inescapable consequence of growing old.43

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Large population based studies in several countries have described associations

between vision and hearing impairments. 41,44-46 The second cross-sectional analysis

of the Blue Mountains Eye Study (BMES) found for each one line reduction in

presenting and best-corrected visual acuity, hearing loss prevalence increased by 13%

and 18%, respectively. This study also found that the two major causes of visual

impairment in older adults, cataract and age-related macular degeneration, were

independently associated with hearing loss. 44

Prevalence of vision and hearing impairment among the elderly varies greatly and this

variation has been largely due to differences in methodologies used to measure the

impairment. That is, self-report measures versus more objective measures of vision

and hearing loss and varying definitions as to what constitutes a significant vision and

hearing loss. The more reliable studies on dual sensory impairment in older adults

using population based samples with participants aged 50 years or older, have

reported prevalence to range from 4.6% to 9.7%. 44,45 This prevalence is thought to

significantly increase in the elderly, with one study reporting 3% of people with a dual

sensory impairment in the 65 to 69 age group increasing to 13.6% in those aged 85

years and older.45 The prevalence of dual sensory impairment has also been found to

be higher in those seeking aged care services and among those in nursing homes. 47

Older people with a dual sensory disability have been found to be at increased risk for

a range of issues and problems including social isolation, depression, cognitive

impairment, dependence and mortality.48-52 Impairment in the two senses is thought

to have a cumulative effect on function and well-being significantly affecting quality

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of life in both physical and mental domains.44 The reaction of older adults to dual

sensory losses and the communication limitations they impose influences psychosocial

functioning which then acts to reduce social interaction and may result in social

isolation.53

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Progression of sensory losses over time

Phase 1 Phase 2 Phase 3

Premorbid status

Decline in sensory acuity

Diagnosis of sensory loss

Living with increasing sensory

loss

Preconceived ideas

Grief, anger, depression

Acceptance of sensory loss

Frustration, anger, depression

Compromise, depression

Uses established

communication habits

Experiences communication

difficulties

Experiences frequent

communication breakdown

Pursues usual social contacts

Uses usual communication

strategies

Experiences social disruption

Tendency to social avoidance

Uses usual and new

communication strategies

Uses usual strategies but

continued breakdowns,

increasing likelihood of social

isolation

Ongoing communication and

psychosocial adaptation

Ongoing communication and

psychosocial adaptation

New strategies reduce

breakdown and isolation

Figure 1: A model of the psychosocial and communication responses to dual sensory loss

(adapted from 53 )

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Much of the research on dual sensory impairment in older adults and the aged urges

health practitioners and disability service providers to re-direct services to this

previously neglected group to assist in preventing the significant functional,

psychosocial and health related deficits that accompany this disability.

There was no literature cited that described the prevalence of the dual sensory

disability of vision and hearing loss in Aboriginal and Torres Strait Islander Australians.

However, recent literature was located describing vision and hearing issues in this

population that are highlighted here for consideration regarding the potential

demographic make-up of those with vision and hearing impairment in Australia.

Trachoma is a leading cause of preventable blindness and is said to account for

approximately 50% of blindness worldwide. In Australia, it is almost exclusively a

disease of Aboriginal Australians, and has been described as remaining hyperendemic

in many areas of remote Australia.54 A large scale population study of the prevalence

of trachoma in the Northern Territory found that across the five communities (n =

1316) active trachoma (assessed as the presence of either follicles or inflammation in

one or both eyes) was at an endemic level (>10%).55

A paper released by the AIHW in 2011 describes the findings of the 2008 National

Indigenous Eye Health Survey (NIEHS).56 This was the first national survey of eye

health in Aboriginal and Torres Strait Islander people since 1980. The survey reports

on the overall prevalence of blindness and vision impairment in Aboriginal and Torres

Strait Islander children aged 5 to 15 years and adults over the age of 40 years. Key

findings were:

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Over the age of 40 years, Aboriginal and Torres Strait Islander people have six

times the rate of blindness of other Australians (Table 2).

Aboriginal and Torres Strait Islander children have less poor vision than other

Australian children (Table 2).

Ninety four per cent of vision loss in Indigenous Australians is preventable or

treatable.

Trachoma was found in one-half of the ‘Very Remote’ communities at endemic

levels.

Cataracts caused one-third (32%) of blindness in Aboriginal and Torres Strait

Islander adults.

Both low vision and blindness in adults increases markedly with age. Among

Indigenous adults over the age of 80 years, 53% had low vision and 13% were

blind.

Glaucoma and age-related macular degeneration are still uncommon causes of

vision loss of Aboriginal and Torres Strait Inlander people.56

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Table 2: Age adjusted (to the Australian population) prevalence of vision loss in Indigenous and non-Indigenous children and adults (Taken directly from 57 )

Vision loss National survey

(NIEHS)

Mainstream Australia Relative risk

Low vision

Children 1.40 (1.38-1.44) 6.36 (6.27-6.25) 0.2

Adults 14.42 (14.39-14.43) 5.19 (5.17-5.20) 2.8

Blindness

Children 0.18 (0.17 -0.18) 0.28 (0.26-0.30) 0.6

Adults 2.79 (2.78 -2.81) 0.45 (0.44-0.46) 6.2

Further, a comprehensive overview of the health and well-being of Australia’s

Aboriginal and Torres Strait Islander people 58 found that:

In children who had received a Child Health Check in 2009 almost 12% had

chronic suppurative otitis media. This is more than three times the rate the

World Health Organisation classes as a massive health problem. The

association between chronic otitis media and hearing loss is well known. 59.60

In 2008, an estimated 8% of Indigenous adults had a profound or severe core

activity limitation with the level of need for assistance among Indigenous

Australians being more than twice as high as that among non-Indigenous

Australians.

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Physical disability is the most common disability type experienced by Aboriginal

and Torres Strait Islander people, with sensory (sight, hearing and speech)

disabilities (42%) being the next most common type of disability. 58

It would appear then that there is some evidence to suggest the possibility of high

levels of dual sensory impairment among Indigenous populations but to date this has

not been a focus of any cited research.

Before concluding this section on the literature it is important to highlight recent

research focusing on deafblindness in adults with intellectual disabilities. The

literature reports that dual sensory loss is often not recognised by adults with

intellectual disabilities, their carers and physicians. A number of barriers are likely to

contribute to the poor levels of recognition, screening and treatment of dual sensory

impairment including a failure to complain, diagnostic overshadowing and examination

difficulties.4 Research carried out in the Netherlands report the first population based

study of combined vision and hearing impairment in adults with intellectual disabilities

that is based on ophthalmologic and audiologic assessments. A prevalence of 5% of

combined sensory impairment was found among the total adult client population of

Dutch intellectual disability service providers (homes, day activities, supported living,

or working). The risk increases significantly with more severe intellectual disability

and with Down syndrome. 61 Dual sensory impairment in those with intellectual

disabilities has been described as an ‘unnoticed, undiagnosed, untreated problem’. 62

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3. Methodology

This project built on the methodology used in the previous work, in 2007, by the

Senses Foundation. Existing population based statistical data was used to determine

the key outcome objectives related to the target population for this project, that is,

those with the dual sensory disability of vision and hearing loss.

3.1 Survey of Disability, Ageing and Carers

The primary source of data used was that from the 2009 Survey of Disability, Ageing

and Carers (SDAC). The SDAC was conducted by the ABS from April to December in

2009. The aims of the survey were to measure the prevalence of disability in

Australia; measure the need for support of older people and those with disabilities;

provide a demographic and socio-economic profile of people with disabilities, older

people and carers compared to the general population; and estimate the number of

and provide information about people who provide care to older people and people

with disabilities. The survey collected information related to three key population

groups:

People with disabilities- information about their long-term health conditions,

need for and receipt of assistance, use of aids and equipment such as

wheelchairs and hearing aids, and participation in community activities.

Older people, that is those aged 60 years and over – information about their

need for, and receipt of assistance, and participation in community activities.

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People who provide assistance to older people and people with disabilities –

information about the type of care they provide, the support available to them,

and the characteristics of carers and some of the effects that the caring role

has on their lives.

The scope of the SDAC was persons in both urban and rural areas in all states and

territories, living in both private and non-private dwellings (including persons in cared

accommodation). Persons whose usual residence was outside Australia, members of

non-Australian defence forces stationed in Australia and persons living in very remote

areas were excluded from the survey. A representative sample of 27,600 households

and occupants of 1,100 health care establishments completed the survey. The final

sample for the 2009 SDAC comprised 64,313 persons for the household component

and 9,470 persons for the cared-accommodation component.2

The ABS produces a series of data cubes which are summaries of all of the data

presented in tables in their publications in spreadsheet format. For the 2009 SDAC,

the consultant used these data cubes to examine the type of data that was available

to Senses Australia to achieve the aims of this project focusing on those with a dual

sensory disability of vision and hearing loss. After an examination of the data, it was

clear that the target group for this population required additional data analysis not

readily available in the standard productions and publications produced by the

Australian Bureau of Statistics. The ABS has a fee based consultancy service that is

able to undertake, subject to confidentiality and standard error constraints, tabulations

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from the survey incorporating data items, populations and geographic areas selected

to meet individual requirements.

Senses Australia used the ABS consultancy service to produce data specific to the

target group of interest. From the data cubes, a total of 33 tables were requested of

the ABS consultancy service to allow for a comprehensive picture of those with a dual

sensory disability of vision and hearing loss. Over the period November 2012 to

March 2013, the ABS consultancy service undertook analysis of the requested data

items which resulted in 21 tabulations. Several tables were not able to be released

by the ABS due to high standard error. In addition, several demographic outcomes

were adjusted due to concerns with regard to reliability and large standard error; this

adjustment primarily being in the reduction of the number of groups within a particular

measure, for example, age. Data included in the results section of this report is data

released by the ABS consultancy service to the Consultant and Senses Australia in

relation to the target group of this project. 63

The SDAC does not routinely collect information related to Indigenous Australians.

Due to very small numbers and difficulties in data extraction, no attempt was made

to examine data that specifically related to people from culturally and linguistically

diverse backgrounds.

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3.2 Disability Services National Minimum Data Set

Seven years of national data have been collected as part of the Disability Services

National Minimum Dataset (DS NMDS) and an earlier agreement, the Commonwealth

State/Territory Disability Agreement. The National Disability Agreement (NDA)

commits all jurisdictions to work towards the objective ‘People with disability and their

carers have an enhanced quality of life and participate as valued members of the

community’.64 The DS NMDS collects information on services and service users where

funding has been provided, during the specified period, by a government organisation

operating under the National Disability Agreement. In the 2009-10 collection, data on

individual service users and the services they received was collected by NDA-funded

agencies. This information was collated by the responsible government-funding

organisation in each jurisdiction and then provided to the AIHW for collation into the

Disability Services National Minimum Dataset. In 2011, the AIHW produced a report

on services provided under the NDA for the 2009-10 period.65 The report has some

limited data and information on service users who are deafblind, which has been

sourced and presented in the results section of this report.

The AIHW produces disability data cubes that are able to be manipulated by the

general public to produce specific data. A data cube is a multidimensional

representation of data which provides fast retrieval and drill down facilities.65 The

data in the disability cubes are presented as a national picture of services received by

people with a disability and do not allow for examination at the state or jurisdictional

level. The consultant used these cubes to explore information available related to the

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target group of those with a dual sensory disability of vision and hearing loss in

Australia. Unfortunately the data cubes did not allow for specific information to be

gathered related to the target group, however some limited information was able to

be extracted related to those described as having a ‘sensory disability’ ( that is,

individuals who have a primary disability of speech, hearing, vision and deafblind).65

This group, is broader than the target group for the Senses Australia, hence the data

resulting from the use of data cubes has been included as an Appendix to this report.

3.3. Definitions

Disability within both the SDAC and DS NMDS is defined within the International

Classification of Functioning, Disability and Health where disability is used as an

umbrella term for impairments, activity limitations and participation restrictions. In

the SDAC a person is defined as having a disability if they have a limitation, restriction

or impairment, which has lasted, or is likely to last, for at least six months and restricts

everyday activities.2 The ABS consultancy service used two different approaches to

generate the data related to the target group:

Those individuals reporting a disability due to loss of sight (not corrected by

glasses or contact lenses) and loss of hearing where communication is

restricted, or an aid to assist with, or substitute for, hearing is used.

Those individuals with the long term conditions diseases of the eye and adnexa

and diseases of the ear and mastoid process.

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The International Statistical Classification of Diseases and Related Health Problems,

10th Revision (ICD-10) was used in the SDAC as the basis of coding of long-term health

conditions and is defined as a disease or disorder which has lasted, or is likely to last,

for six months or more. Individuals may or may not have a long-term condition with

a resulting disability. Alternatively individuals with a loss of sight may not have

diseases of the eye and adnexa, for example, the loss of sight may be due to an injury.

The ABS consultancy service, while undertaking the work for Senses Australia, used

these two groups interchangeably to generate tables and data that would be the most

reliable.63 Those tables released to Senses Australia are reported on in the results

section according to the approach taken to generate the data.

The DS NMDS uses the category deafblind disability to refer to dual sensory

impairments associated with severe restrictions in communication, and in the ability

to participate in community life. The DS NMDS describes deafblindness as not just

vision impairment with a hearing loss, or a hearing loss with vision impairment, but

rather as a unique disability of its own requiring distinct communication and teaching

practices.65

In this report, the terminology dual sensory impairment, dual sensory disability and

deafblind will be used interchangeably to describe the target group.

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4. Results

The ABS consultancy service generated a series of tables related to those persons in

WA and Australia with a dual sensory impairment.63 These tables are presented in

the results section, along with any relevant data from the DS NMDS, to describe

demographic characteristics, geographical location, level of limitation, long term health

conditions, living arrangements, carer characteristics and need for assistance among

those with a dual sensory impairment.

Key outcomes of this project were to identify the number, age, gender and

geographical location of people who have a dual sensory disability of vision and

hearing loss. In 2009, the estimated resident population of WA was 2,224,300 and

21,791,000 in Australia. The estimated target population for Senses Australia makes

up 0.35 % (n = 7,900) of the population of WA and 0.46% (n = 99,800) of the

population of Australia (Table 3).63

In 2009-10, the data from the DS NMDS reported that 295,024 people with disability

accessed services across Australia. The median age of service users was 33.0 years

and the age group with the largest number of disability support service users was

those aged 25-44 years. The smallest number of disability support service users was

in the 65 years and older age group. Those individuals with a primary disability of

deafblind made up 0.2% (n = 679) of all disability support service users.65

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4.1. Age and Gender

For both WA and Australia there was a greater proportion of women ((56% (n =

4,400) in WA and 58% (n = 58,500) in Australia)) than men ((44% (n = 3,500) in WA

and 42% (n = 41,500) in Australia)) reporting having the dual sensory disability of

vision and hearing loss (Figure 2).

Figure 2: Proportion of males and females with dual sensory disability of loss of vision and loss of hearing in WA and Australia. (Based on ABS data 63 )

There was little difference in the distribution of people with dual sensory disability of

vision and hearing loss in WA and Australia according to age. However, proportionally

in WA (31.4 %, n = 1,100) there were more males in the 60 to 74 year age group

0

10

20

30

40

50

60

WA Australia

Perc

enta

ge Males

Females

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with this form of disability compared to males of this age in Australia (23.9%, n

=9,900). In both WA and Australia, there were proportionally more males than

females with a vision and hearing loss in those under 60 years of age and those in the

60-74 year age group. By far the greatest proportion of people with dual sensory

disability of vision and hearing loss in both WA and Australia were aged 75 years and

older and there were higher proportions of women than men in this age group both

within the state and Australia wide. (Table 3)

Table 3: All persons with loss of sight and loss of hearing by age, gender and geographical location (Western Australia and Australia) (Based on ABS data 63 )

Western Australia

Australia

n % n %

Males 0 – 59 years 600** 17.1 7,700 18.6 60 - 74 years 1,100* 31.4 9,900 23.9 75+ years 1,800* 51.4 23,900 57.6 Total 3,500 100 41,500 100 Females 0 - 59 years 600** 13.6 6,000* 10.3 60 - 74 years 700** 15.9 9,400 16.1 75+ years 3,100 70.5 43,100 73.7 Total 4,400 100 58,500 100 Persons 0-59 years 1,200* 15.2 13,700 13.7 60-74 years 1,800* 22.8 19,200 19.2 75+ years 4,900 62.0 66,900 67.0 Total 7,900 100 99,800 100

*estimate has a relative standard error between 25% and 50% and should be interpreted with caution ** estimate has a relative standard error greater than 50% and is considered too unreliable for general use

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Figure 3: All persons with loss of sight and loss of hearing by age, gender and geographical location (Western Australia and Australia) (Based on ABS data 63 )

The DS NMDS reported the age and gender of people who have a primary disability

of being deafblind. There are similar proportions of males (52.7%, n =358) and

females (47.2, n =321) who are deafblind and disability supports service users, a

slightly different profile to that of all service users where the majority were male (59%,

n =174,912). Similarly, the age group distribution for those who are deafblind and

service users is slightly different from all service users, with those 65 years and older

making up 20% (n = 140) of deafblind service users compared with 6% (n = 18,006)

of all disability support service users (Table 4).65

0

10

20

30

40

50

60

70

80

Males 0-59 years 60-74years

75+ years Females 0-59 years 60-74years

75+ years

Perc

enta

ge

Western Australia Australia

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Table 4: Disability support service users who have a primary disability of deafblind according to age (adapted from Table 4.1) 65

Age group

n % 0-14 years 119 17.5 15-44 years 247 36.4 45 – 64 years 173 25.5 65+ years 140 20.6 Total 679 100

4.2 Geographical location

As part of the Australian Standard Geographical Location, the ABS uses the

Accessibility/Remoteness Index of Australia (ARIA) to describe areas of Australia

according to an aggregation of non-contiguous geographical areas which share a

common characteristic of remoteness. The categories are Major Cities of Australia;

Inner Regional Australia; Outer Regional Australia; Remote Australia; Very Remote

Australia; and Migratory.66 Due to small estimates in several of these categories in

the target group of interest for the project, the ABS have used Major Cities of Australia

and grouped all the other categories into ‘Regional and Remote Australia’.

Similar proportions of people with diseases of the eye and adnexa and diseases of the

ear and mastoid process lived in Major Cities of Australia and Regional and Remote

Australia for both WA and Australia (Table 5). An estimated 2,400 (29.7% of the

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target group in WA) of people with diseases of the eye and adnexa and diseases of

the ear and mastoid process live in regional and remote areas of WA, and an estimated

38,000 (34.7% of the target group in Australia) of people with diseases of the eye

and adnexa and diseases of the ear and mastoid process live in regional and remote

areas of Australia.

Table 5: All persons with diseases of the eye and adnexa and diseases of the ear and mastoid process, by Accessibility and Remoteness Index of Australia (ARIA) and gender.63

Males Females Total

n % n % n % Western Australia Major cities 2,500* 62.5 3,200 78.0 5,700 70.3 Regional and Remote 1,500* 37.5 900* 22.0 2,400* 29.7 Total 4,000* 100 4,100 100 8,100 100 Australia Major cities 30,200 60.6 41,400 69.1 71,600 65.3 Regional and Remote 19,600 39.4 18,500 30.9 38,100 34.7 Total 49,800 100 59,900 100 109,700* 100

*estimate has a relative standard error between 25% and 50% and should be interpreted with caution

** estimate has a relative standard error greater than 50% and is considered too unreliable for general use

Some gender differences in geographical location were evident, with proportionally

more males than females with diseases of the eye and adnexa and diseases of the ear

and mastoid process residing in regional and remote areas of both WA and Australia.

This gender difference was particularly evident in WA, with 37.5% (n = 1,500) of

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males residing and rural and remote part of WA compared with 22% (n = 900) of

females (Figure 4).

Figure 4: All persons with diseases of the eye and adnexa and diseases of the ear and mastoid process, by ARIA and gender. (Based on ABS data 63 )

The DS NMDS collects information related to Indigenous service users of disability

support services. Five per cent (n = 36) of users of disability support services with a

primary disability of deafblind were of Indigenous background. Proportionally, this

was the third highest reported primary disability of Indigenous users of disability

support services following intellectual (5.7%, n =4809) and physical disability (5.25,

n = 2,513). Overall, 5% (n = 14,251) of all users of disability support services were

of Indigenous background.65

0 10 20 30 40 50 60 70 80

WA

Major cities

Regional and remote

Australia

Major cities

Regional and remote

Percentage

Females Males

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4.3 Core Activity Limitation

The SDAC reports level of impairment according to levels of limitation within three

main core activities of life: self-care, mobility and communication. Four levels of core

activity limitation are determined, based on whether a person needs personal

assistance with, has difficulty with, or uses aids or equipment for any of the core

activities.66 The four levels of core activity limitation are:

Profound – unable to perform a core activity or always needing assistance;

Severe – sometimes needs assistance to perform a core activity, or has difficulty

understanding or being understood by family and friends, or can communicate

more easily using sign language or other non-spoken forms of communication;

Moderate – does not need assistance, but has difficulty performing a core

activity; and

Mild – has no difficulty performing a core activity but uses aids or equipment

because of disability.

A ‘specific limitation or restriction’ is defined as a limitation in core activities or a

restriction in schooling or employment.

The severity of impairment among the target group of those with a dual sensory

disability of vision and hearing loss was greatest in those aged 75 years and older

both within WA and Australia (Figure 5).

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Figure 5: All persons with loss of sight and loss of hearing, Disability status by age. (Based on ABS data 63 )

Amongst the target group, the estimates for WA reported that there were few persons

without a specific restriction and while it was evident some, in the 0-59 years age

range, had a schooling or employment restriction the estimates were too small for

publication. In Australia, approximately 4.2% (n = 4,200) with a dual sensory loss of

vision and hearing reported having no specific restriction in core activities and 2.4 %

(n = 2,400) a schooling or employment restriction. Over half (61%, n = 60,800) of

the target group within Australia reported a profound or severe core activity limitation

and almost a third (32.5%, n = 32,500) a moderate or mild core activity limitation

(Table 6). Due to some of the data being suppressed due to high standard error

amongst the reported data for WA for this target group, estimates for those with a

0

10

20

30

40

50

60

70

80

0 -59 years 60-74 years 75+ years

Perc

enta

ge

Profound/severe core activity limitation Moderate/mild core activity limitation

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35 | P a g e

profound or severe core activity limitation were not able to be published. However,

from the total numbers and distribution according to disability status it is likely the

highest proportion of those with a dual sensory disability in WA have a profound or

severe core activity limitation (Table 7).

There was a gender difference in the reported level of impairment both within WA and

Australia. In WA, proportionally more women (87.1%, n = 2,700) than men (77.8 %,

n = 1,400) reported a profound or severe core activity limitation. This trend was

similar for those with a vision and hearing loss within Australia, with proportionally

more women (78.4%, n = 33,800) than men (59.8%, n = 14,300) reporting a

profound or severe core activity limitation (Tables 6 and 7).

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36 |

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A Clear View | 37


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38 | P a g e

In WA, proportionally more of the target population living in regional and remote parts

of WA than the estimated number of people living in regional and remote areas of

Australia with diseases of the eye and adnexa and diseases of the ear and mastoid

process report having a profound or severe core activity limitation (58%, n = 1,400 in

WA; 49%, n= 18,700) (Figure 6).

Figure 6: Persons with loss of sight and loss of hearing, Disability status according to ARIA in WA and Australia. (Based on ABS data 63 )

An individual’s ability to participate in employment provides further information as to

the level of impairment being experienced by an individual and the degree to which

they are actively participating in their community and civic life. Estimates for WA were

0

10

20

30

40

50

60

WesternAustralia

Majorcities

Regional &Remote

Australia Majorcities

Regional &Remote

Perc

enta

ge

Profound or severe core activity limitation Moderate or mild care activity limitation

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not able to be released publically, however for the target group in Australia more

males (47.2%, n= 5,100) than females (28.2, n = 2,200) aged 15-64 years with loss

of sight and hearing are estimated to be in the labour force (Table 8).

Table 8: All persons aged 15-64 years living in households with loss of sight and loss of hearing, by gender and labour force status. 63

Males

Females Persons

n % n % n % In the labour force 5,100* 47.2 2,200* 28.2 7,400 39.8 Not in the labour force

5,700* 52.8 5,500* 70.5 11,200 60.2

Total 10,800 100 7,800* 100 18,600 100 *estimate has a relative standard error between 25% and 50% and should be interpreted with caution

In Australia, the labour force participation rate for persons with a dual sensory loss

was 39.6%, lower than that for all people with disabilities aged 15-64 years and living

in households (54%). Similarly compared to all people with disabilities, labour force

participation rates were lower for males with loss of sight and loss of hearing (60%

compared to 47.2% respectively) and for females in the target group (49% compared

to 28.2% respectively) (Figure 7 ).2

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Figure 7: Participation rate of persons aged 15-64 years living in households with loss of sight and loss of hearing and all people with disability in Australia, by gender.

The 2009-2010 DS NMDS reported approximately 98,000 service users received open

employment services (assist people to retain paid employment in the open market)

and 22,000 service users received supported employment services (assist people to

work in specialised and supported work environments). Those described as having a

primary disability of deafblind made up 0.1% of those in open employment and 0.3%

of those in supported employment. Those users of open employment services aged

15-64 years according to the largest primary disability groups and those who are

deafblind are described in Table 9. Those who are deafblind have the third highest

proportion of individuals who are unemployed, following those with a physical

disability and those with a psychiatric disability.65

0

10

20

30

40

50

60

Males Females Persons

Part

icip

atio

n ra

te

People with disabilities People with dual sensory loss

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Table 9: Users of open employment services aged 15-64 years, labour force status, by primary disability (adapted from Table 3.10 65 )

Employed Unemployed Total n % n % n % Intellectual 6,632 54.2 5,610 45.8 12,242 100 Physical 7,027 24.3 21,874 75.7 28,901 100 Autism 1,619 43.3 2,116 56.7 3,735 100 Psychiatric 10,310 30.0 23,693 70.0 33,824 100 Deafblind 24 32.4 50 67.6 74 100

4.4 Long-term health conditions

The target group reported a number of other long-term health conditions other than

diseases of the eye and adnexa and diseases of the ear and mastoid process. The

types of long term health conditions reported for the target group was similar within

both WA and Australia, with the highest estimates of people being in the ‘all other

physical conditions’ followed by ‘diseases of the circulatory system’ (Table 10).

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Table 10: All persons with diseases of the eye and adnexa and diseases of the ear and mastoid process, Type of long-term condition by geographical area. 63

Long Term Health Condition

WA Australia

Neoplasms 300** 4,900 Endocrine, nutritional, metabolic disorders

3,200 35,900

Diseases of the nervous system 500** 13,400 Diseases of the eye and adnexa 8,100 109,700 Diseases of the ear and mastoid process

8,100 109,700

Diseases of the circulatory system

4,000 67,400

Diseases of the respiratory system

1,200** 17,200

Diseases of the digestive system

800** 12,900

Injury, poisoning and other external causes

1,500* 18,900

All other physical conditions 6,200 83,900 Mental and behavioural disorders

2,400* 36,700

*Estimate has a relative standard error between 25% and 50% and should be used with caution

**Estimate has a relative standard error greater than 50% and is considered too unreliable for general use

The DS NMDS described 41% of service users having at least one other significant

disability. Service users who reported their primary disability as being intellectual

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(58%), acquired brain injury (61%) neurological (55%) or deafblind (52%) were the

most likely to report other significant disabilities. 65

4.5. Living Arrangements

The SDAC gathers information related to where an individual lives along with data

related to people who care for people with disabilities and older people. It was

estimated that almost all of the persons with diseases of the eye and adnexa and

diseases of the ear and mastoid process aged 59 years or younger lived in private

dwellings (Table 11).

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Table 11: All persons living in establishments with diseases of the eye and adnexa and diseases of the ear and mastoid process by age and geographical location (WA and Australia). 63

Age groups

Western Australia

Australia

n % n % 0 -59 years Lives in private dwelling 700** 100 11,900 99.2 Lives in non-private dwelling

0 0 100** 0.8

Total 700** 100 12,000 100 60+ years Lives in private dwelling 6,400 86.5 76,900 78.7 Lives in non-private dwelling

1,000 13.5 20,800 21.3

Total 7,400 100 97,700 100

Total Lives in private dwelling 7,100 87.7 88,800 81.0 Lives in non-private dwelling

1,000 12.3 20,900 19.0

Total 8,100 100 109,700 100 *estimate has a relative standard error between 25% and 50% and should be interpreted with caution

** estimate has a relative standard error greater than 50% and is considered too unreliable for general use

For those over sixty years with diseases of the eye and adnexa and diseases of the

ear and mastoid process more than three quarters of people reported living in private

dwellings in both WA and Australia, with proportionally more people living in non-

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private dwellings in Australia (21.3%, n = 20,800) when compared to Western

Australia (13,5%, n=1000) (Figure 8).

Figure 8: Persons living in establishments with diseases of the eye and adnexa and diseases of the ear and mastoid process by geographical location (WA and Australia). (Based on ABS data 63 )

In Australia, 40% ( n= 35,800) of those with diseases of the eye and adnexa and diseases of

the ear and mastoid process reporting living in private dwellings had profound or severe core

activity limitations compared to almost all (96.8%, n= 20,600) of those living in non-private

dwellings. Similar levels of impairment were found between those living in private and non-

private dwellings in Western Australia (Table 12 and Table 13).

0

10

20

30

40

50

60

70

80

90

Lives in private dwelling Lives in non-private dwelling

Perc

enta

ge

WA Australia

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46 |

Pa

ge

Ta

ble

12: A

ll pe

rson

s w

ith d

iseas

es o

f the

eye

and

adn

exa

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ss, D

isabi

lity

stat

us b

y ag

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dw

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g ty

pe in

Wes

tern

Aus

tralia

. 63

Pr

ofou

nd /s

ever

e co

re

activ

ity li

mita

tion

Mod

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e/m

ild c

ore

activ

ity

limita

tion

With

out s

pecif

ic re

stric

tion

Tota

l

n

%

n %

n

%

n %

0-

59 y

ears

Lives

in p

rivat

e dw

ellin

g 0

0 np

np

0

0 70

0**

100

Lives

in n

on-p

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g 0

0 0

0 0

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tal

0 0

np

np

0 0

700*

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0

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rs

Lives

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.0

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56.8

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45

.1

np

n/a

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7,10

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0 Liv

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900

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0

0 np

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Tota

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51.8

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.5

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ise in

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ted

A Clear View | 47


47 |

Pa

ge

Ta

ble

13:

All p

erso

ns w

ith d

iseas

es o

f the

eye

and

adn

exa

and

dise

ases

of t

he e

ar a

nd m

asto

id p

roce

ss, D

isabi

lity

stat

us b

y ag

e an

d by

dw

ellin

g ty

pe in

Aus

tralia

. 63

Pr

ofou

nd /s

ever

e co

re a

ctiv

ity

limita

tion

Mod

erat

e/m

ild c

ore

activ

ity

limita

tion

With

out s

pecif

ic re

stric

tion

Tota

l

n

%

n %

n

%

n %

0-

59 y

ears

Live

s in

priv

ate

dwel

ling

2,00

0**

16.8

6,

300*

52

.9

1,30

0*

10.9

11

,900

10

0 Li

ves

in n

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0 0

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* 10

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tal

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52

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rs

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00

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Live

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20,6

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98.6

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Tota

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51

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5,

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*est

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se

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48 | P a g e

4.6 Carer Characteristics

The ABS defines a primary carer as ‘a person who provides the most informal

assistance, in terms of help or supervision, to a person with one or more disabilities

or aged 60 years and over. The assistance has to be ongoing, or likely to be ongoing,

for at least six months and be provided for one or more of the core activities

(communication, mobility and self-care)’. 2,p.34 There is an estimated 700 carers of

people who have diseases of the eye and adnexa and diseases of the ear and mastoid

process in WA and 17,000 primary carers of the target group across Australia. The

majority of primary carers of people with diseases of the eye and adnexa and diseases

of the ear and mastoid process live in the major cities of Australia (n = 12,300, 72.3%)

and the remainder (n = 4,700, 27.7%) in regional and remote areas of the country.

In WA the primary carers are all women, however within Australia a third of the carers

of people who have diseases of the eye and adnexa and diseases of the ear and

mastoid process are males (33.5%, n = 5,700) (Table 14). There is variation in the

gender of the carer according to age, with similar estimates of male (n= 1,400, 49.6%)

and female (n = 1,400, 50.4%) carers among those aged 75 years and older and a

dominance of female carers among those aged 60 to 74 years (n = 5,400, 76.8%)

and those less than 60 years of age (n = 4,400, 62.6%) with this dominance much

greater in the middle age group (Figure 9).

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Table 14: Primary Carers of a main recipient with diseases of the eye and adnexa and diseases of the ear and mastoid process by geographical region and gender.63

Western Australia

Australia

n % n % Males 0 0 5,700 33.5 Females 700 100 11,300 66.5 Total 700 100 17,000 100

Figure 9: Primary carers of a main recipient with diseases of the eye and adnexa and diseases of the ear and mastoid process by age and gender in Australia (All estimates with the exception of the total for females have a relative standard error between 25% and 50% and should be used with caution). (Based on ABS data 63 )

0

10

20

30

40

50

60

70

80

0-59 years 60-74 years 75+ years Total

Perc

enta

ge

Males Females

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Just over half (n = 8,900) of primary carers of persons with diseases of the eye and

adnexa and diseases of the ear and mastoid process spend 40 hours or more per week

in the caring role and approximately 40% (n = 6,500) of carers spend less than 20

hours per week in this role (Table 15).

Table 15: Primary carers of a main recipient with diseases of the eye and adnexa and diseases of the ear and mastoid process, by time spent caring for main recipient per week in Australia.63

n

%

Less than 20 hours 6,500 38.2 20-39 hours 1,600 9.4 40 hours or more 8,900 52.4 Total 17,000 100

The number of years for which a carer had cared for a person with diseases of the

eye and adnexa and diseases of the ear and mastoid process was variable with the

largest proportion of carers reporting they had assumed this role for between five to

nine years (n = 6,400, 37.7%) (Figure 10).

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Figure 10: Primary carers of a main recipient with diseases of the eye and adnexa and diseases of the ear and mastoid process by years of care provided to main recipient of care in Australia (all estimates except 5-9 years should be interpreted with caution as have a relative standard error between 25% and 50%).63

4.7 Support needs

The need for assistance among persons aged 60 and over with diseases of the eye

and adnexa and diseases of the ear and mastoid process living in households increased

with age with the highest proportion of people indicating they needed assistance with

at least one activity in the 85 years and older age group (n = 38,700, 92.8%) (Figure

11).

0

5

10

15

20

25

30

35

40

Less than 2 years 2-4 years 5-9 years 10-24 years 25 years or more

Perc

enta

ge

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Figure 11: All persons with diseases of the eye and adnexa and diseases of the ear and mastoid process, aged 60 years and over, by need for assistance and age (estimates for assistance not needed in those aged 85 years and over should be interpreted with caution as has a relative standard error between 25% and 50%) (Based on ABS data 63 )

In WA, it is estimated that 5,200 persons with diseases of the eye and adnexa and

diseases of the ear and mastoid process needed assistance with broad activity areas

and 4,200 received assistance. Within Australia, it is estimated 82,000 persons with

diseases of the eye and adnexa and diseases of the ear and mastoid process needed

assistance with broad activity areas and 59,400 received assistance (Figure 12).

0102030405060708090

100

60-74 years 75-84 years 85 years and over

Perc

enta

ge

All needing assistance with at least one activity Assistance not needed

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Figure 12: All persons with diseases of eye and adnexa and diseases of the ear and mastoid process by assistance need and geographical area (WA and Australia).63

The areas of activity in which people with diseases of the eye and adnexa and diseases

of the ear and mastoid process require assistance is similar within WA and Australia.

Health care, mobility and reading and writing tasks were the three most common

areas of activity in which the target group required assistance in WA and health care,

mobility and self-care were the more common areas of activity in which persons

required assistance within Australia (Table 16).

0

10

20

30

40

50

60

70

80

WA Australia

Perc

enta

ge

Needs assistance with broad activity area Receives assistance

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Table 16: All persons living in establishments with diseases of the eye and adnexa and diseases of the ear and mastoid by type of activity for which assistance needed. 63

Western Australia

Australia

n % n % Self-care 3,300 49.2 50,000 52.8 Mobility 4,200 63.1 62,800 66.3 Communication 900* 13.9 19,300 20.3 Cognitive/emotional tasks 3,200* 48.4 44,300 46.7 Health care 5,300 80.2 74,000 78.1 All needing assistance with personal activities

6,100 92.3 84,500 89.2

Reading or writing tasks 3,800* 56.8 45,000 47.5 Transport 3,800* 57.1 43,500 45.9 Household chores 3,200* 48.4 38,700 40.8 Property maintenance 3,300* 50.3 45,800 48.3 Meal preparation 1,400* 20.8 17,200 18.2 All needing assistance with at least one activity

6,600 100 94,800 100

*Estimate has a relative standard error between 25% and 40% and should be used with caution

Across Australia, persons with diseases of the eye and adnexa and diseases of the ear

and mastoid process aged 60 years and over and living in households received some

form of assistance from an informal provider (eg partner, daughter, relative) and/or a

formal provider (eg government, private non-profit organisation, private commercial

organisation). Eighty two per cent (n = 45,800) of the target group aged 60 years

and over living in households reported receiving assistance from an informal provider

and 73.6% (n = 41,000) received assistance from formal providers. Informal

providers provided assistance primarily in the areas of mobility, reading or writing

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tasks, transport, meal preparation and self-care. Help from formal providers was

primarily received for healthcare, household chores, property maintenance and

cognitive or emotional tasks (Figure 13).

Figure 13: All persons with diseases of the eye and adnexa and diseases of the ear and mastoid process, aged 60 years and over, living in households, needing assistance, activities by provider type (The estimates provided for formal providers have a relative standard error between 25% and 50% and should be used with caution). (Based on ABS data 63 )

Within Australia, approximately 80% (n = 87,300) of all persons with diseases of the

eye and adnexa and diseases of the ear and mastoid use aids or equipment to assist

them in the core activities of self-care, mobility, communication and managing their

health conditions (Figure 14).

0102030405060708090

Perc

enta

ge

Formal providers Informal providers

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Figure 14: All persons living in establishments with diseases of the eye and adnexa and diseases of the ear and mastoid by use of aids and equipment. (Based on ABS data 63 )

Within the target group, just over half of people (54.9%, n =60,300) reported using

some form of communication aid with by far the most common aid being used being

a hearing aid (45.8%, n= 50,200) (Table 17).

Table 17: All persons living in establishments with diseases of the eye and adnexa and ear and mastoid process by type of communication aids used. (Based on ABS data 63 )

*estimate has a relative standard error between 25% and 50% and should be used with caution

0

10

20

30

40

50

60

70

80

All using aids and equipment Does not use aids orequipment

Perc

enta

ge

Communication aids n %

Hearing aid 50,200 45.8 Other hearing aids including cochlear implants 4,100* 3.7 Low tech reading, writing or speech aids 5,200* 4.7 High tech reading, writing or speech aids 5,500* 5.0 Mobile or cordless telephone 8,800* 8.1 Reading, writing or speaking aid not specified 5,600* 5.1 Does not use a communication aid 49,500 45.1 Total 109,700 100

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The DS NMDS reported on the use of multiple service type outlets by users of disability

support services. Multiple service users are people who accessed more than one

service type outlet providing services under the National Disability Agreement. The

use of multiple service type outlets was most common among users with a primary

disability of intellectual (2.2 outlets per service) and deafblind (2.0 outlets per user).

The AIHW describes users with the highest level of support need for activities of daily

living as being much more likely to access multiple outlets than service users with less

frequent need for help with activities of daily living. The use of multiple service groups

was most common among users with a primary disability of intellectual (1.6 service

users per group) and deafblind (1.5 service users per group).65

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5. Discussion and Key Findings

This work produced a number of key findings related to those with a dual sensory

impairment of vision and hearing loss living in both WA and Australia. The primary

source of information was data manipulated from the 2009 Survey of Ageing, Disability

and Carers. Some limited data from the DS NMDS related to users of disability support

services who are deafblind was also collated and reported. The results from the data

analysis produced more extensive information than the original project aims, providing

some additional information related to carers of those with a dual sensory disability

along with some detail regarding the need for assistance in a range of broad activity

tasks. The support needs of those with diseases of the eye and adnexa and diseases

of the ear and mastoid process were reported only for those aged 60 years and over

and therefore will not be presented as key findings. Key findings are highlighted and

discussed for each outcome of the project.

i) To identify the number, age, gender and geographical location of

people who have a dual sensory disability of vision and hearing loss.

In 2009, an estimated 7,900 Western Australians and 99,800 Australians had a dual

sensory disability of vision and hearing loss. The target group made up 0.35% and

0.5% of the resident population for WA and Australia respectively. These estimates

are much higher than those identified by Prain in 2005 6 and significantly less than

those described by Access Economics who estimated 332,400 people in 2010 had a

dual sensory disability (confidential report prepared for Able Australia). These

differences in estimates are likely to be a reflection of the reported ongoing difficulties

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highlighted in the literature in accurately ascertaining the prevalence of deafblindness

within a population. 6,7,8,9, However, the SDAC is considered to be the best Australian

source of information on the number of people with a disability and is a key dataset

for estimating prevalence information on disability and carers. 67

Key Finding 1

In 2009, an estimated 7,900 Western Australians and 99,800 Australians had a dual

sensory disability of loss of vision and loss of hearing. The target group made up

0.35% and 0.5% of the resident population for WA and Australia respectively.

Key Finding 2

Individuals with a primary disability of deafblind made up 0.2% (n = 679) of all

users of disability support services.

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Individuals with a primary disability of deafblind made up 0.2% (n = 679) of all users

of disability support services. The small number of users of disability support services

who are deafblind may be a reflection of people with this disability type not accessing

services for a range of reasons such as geographical accessibility and suitability of

available services. It has been demonstrated that the use of services by those who

are deafblind differ significantly from those of the general population. Key factors that

have been identified as barriers to the deafblind population accessing services include

misinformation, miscommunication and lack of knowledge about the disability by

health professionals. 68,69

The finding of a dominance of females among those with dual sensory impairment in

this work is a similar finding to that of other research focusing on combined loss of

vision and hearing in older people. 52,70 While larger proportions of women than men

overall had a dual sensory impairment, in the younger age groups more males than

females reported a dual sensory impairment. Research has highlighted more men

than women report a hearing loss, with risk factors being exposure to loud noises over

long periods of time, smoking and a history of middle ear infections.71

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Population projections by the ABS suggest that by the year 2052 the average life

expectancy for Australian women could be as high as 95 years and for men more than

Key Finding 3

For both WA and Australia, overall there was a greater proportion of women than

men reporting having the dual sensory disability of loss of vision and loss of hearing.

However in the younger age groups more males than females reported having this

disability type. Up to two-thirds of people in this target group were the elderly,

aged 75 years and older (62% in WA and 67 % in Australia).

Key Finding 4

Similar proportions of males and females with a primary disability of

deafblindness were users of disability support services. Those 65 years and

older made up 20% (n =140) of deafblind service users compared with 6% (n

= 18,006) of all disability support service users in this age group.

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92 years. The report by Access Economics indicated that of the 288,000 people

estimated to have deafblindness in 2010, 97.6% (n = 281,000) were aged 65 years

and over. Although the greatest proportion of people with a dual sensory impairment

was in those 75 years and older, this work did not demonstrate such a dominance of

dual sensory impairment in those over 65 years as that found by Access Economics.

Research in Australia has found that dual sensory impairments are likely to be markers

of biological ageing rather than chronological ageing as these two impairments share

common risk factors in addition to age such as genetic, lifestyle and environmental

factors. 44

Overall, approximately two thirds of people with diseases of the eye and adnexa and

diseases of the ear and mastoid process live in the major cities of Australia. Of interest

was the higher number of males than females within the target group who live in rural

and remote regions of WA and Australia. The SDAC data was not able to indicate

whether people were of Aboriginal and Torres Strait Islander background, however

the DS NMDS data found that five per cent of users of disability support services with

a primary disability of deafblind were of Indigenous background.

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ii) The degree of activity and participation limitations for those with

dual sensory disability of vision and hearing loss

The degree of activity and participation limitations among those with the dual sensory

disability of vision and hearing loss increased with age and was greatest among those

aged 75 years and older both within WA and Australia. Only an estimated 4.2% (n =

4,200) of people with loss of vision and loss of hearing reported having no specific

limitation in core activities. Over half (61%, n = 60,800) of those with loss of vision

and loss of hearing in Australia reported a profound or severe core activity limitation

and almost a third a moderate or mild core activity limitation. Significant levels of

functional impairment among those with congenital deafblindness and acquired

deafblindness has been described by several researchers. 5,8, 9,32, 70 Loss of function

Key Finding 5

Approximately a third ( n = 38,100 in Australia, n = 2,400 in WA) of people with

diseases of the eye and adnexa and diseases of the ear and mastoid process live in

regional and remote areas of Australia. In both Australia and WA more males than

females with diseases of the eye and adnexa and diseases of the ear and mastoid

process live in regional and remote areas.

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among older people with loss of vision and loss of hearing has been found to contribute

to depression and a decreased quality of life. 44, 46

Key Finding 6

The degree of activity and participation limitations among those with the dual

sensory disability of loss of sight and loss of hearing increased with age and

was greatest among those aged 75 years and older both within WA and

Australia. Over half (61%, n = 60,800) of those with loss of vision and loss

of hearing in Australia reported a profound or severe core activity limitation

and almost a third (32.5%, n = 32,500) a moderate or mild core activity

limitation.

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Workforce participation rates for people with disabilities are significantly less than

those for the non-disabled population. In 2009, the overall participation rate for

people with disabilities aged 15-64 years and living in households was 54%,

significantly less than that for the non-disabled population where the participation rate

was 83%. 2 It appears that those with a dual sensory impairment are more

disadvantaged than those overall with disabilities in terms of their ability to participate

in the workforce. The National Disability Strategy (2011) describes the importance

of work for people with disabilities, stating it is essential to an individual’s economic

security and is important to achieving social inclusion. 72 Research focusing on

workforce participation in those acquiring a dual sensory disability as they age,

reported people wanted to continue working past retirement age. However, higher

Key Finding 7

In Australia, labour force participation rates were lower for males with loss

of sight and loss of hearing than those for all males with disabilities

(47.2% compared to 60% respectively) and for females in the target

group compared to all females with disabilities (28.2% compared to 49%

respectively).

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proportions of people with loss of vision and loss of hearing felt they were forced into

retirement when compared to those who did not have a dual sensory disability.73

Key Finding 8

For those over 60 years with diseases of the eye and adnexa and diseases of

the ear and mastoid process more than three quarters of people reported living

in private dwellings in both WA and Australia. In Australia, 40% (n = 35,800)

of those with diseases of the eye and adnexa and diseases of the ear and

mastoid process who lived in private dwellings had profound or core activity

limitations compared to almost all (97%, n = 20,600 ) of those living in non-

private dwellings.

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iii) Carer characteristics

There is an estimated 700 carers of people who have diseases of the eye and adnexa

and diseases of the ear and mastoid process in WA and 17,000 primary carers of the

target group across Australia. The majority of carers live in the major cities of

Australia, a similar geographical profile to that of all carers in Australia in 2003 where

68% (1.1 million carers) of the 1.6 million carers aged 15 years and over lived in

‘Major Cities’ of Australia. 74

Just over half (53%, n = 8,900) of primary carers of persons with diseases of the eye

and adnexa and diseases of the ear and mastoid process spend 40 hours or more per

week in the caring role. This is equivalent to a traditional full time job of 40 hours

per week, and again reflects the profile of carers in Australia where reportedly almost

half of carers (48%) spend more than 40 hours a week or more in the caring role. 74

Key Finding 9

There is an estimated 700 carers of people who have diseases of the

eye and adnexa and diseases of the ear and mastoid process in WA

and 17,000 primary carers of the target group across Australia.

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This report may be the first in Australia to describe the demographic characteristics,

carer characteristics and activity and participation limitations among those with a dual

sensory disability of vision and hearing loss. A number of key findings have been

Key Finding 10

In WA the primary carers of people who have diseases of the eye and

adnexa and diseases of the ear and mastoid process are all women,

however across Australia a third of carers of the target group are males

(33%, n = 5,700).

Key Finding 11

Just over half (n = 8,900) of primary carers of persons with diseases

of the eye and adnexa and diseases of the ear and mastoid process

spend 40 hours or more per week in the caring role.

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reported to assist Senses Australia and other agencies around Australia to gain some

further insight into the specific service needs of those who are deafblind.

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6. References

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2. Australian Bureau of Statistics (ABS) Disability, Ageing and Carers, Australia: Summary of Findings 2009. 2010 Available at http://www.abs.gov.au/ausstats/abs@nsf/0/ Accessed October 2012.

3. Australian Institute of Health and Welfare (AIHW). Disability prevalence and trends. Disability series. Canberra: AIHW; 2003.

4. Fellinger J, Holzinger D, Dirmhirn A, Van Dijk J, Goldberg D. Failure to detect deaf-blindness in a population of people with intellectual disability. Journal of Intellectual Disability Research. 2009;53(10):874-81.

5. Ronnberg JBE. A review and evaluation of research on the deaf-blind from perceptual, communicative, social and rehabilitative perspectives. Scandinavian Audiology. 2001;30(2):67-77.

6. Prain M. An Update of the 1994 report: Investigation into the needs of and services for people in Australia who are deaf-blind. Victoria; 2005.

7. National Society for the Deaf-Blind. A study of deaf-blind demographics and services in Canada. 2004 Available at http://www.cnsdb.ca/ Accessed March 2013.

8. Dammeyer J. Interaction of dual sensory loss, cognitive function, and communication in people who are congenitally deaf-blind. Journal of Visual Impairment & Blindness. 2010;104(11):719-25.

9. Dalby DM, Hirdes JP, Stolee P, Strong JG, Poss J, Tjam EY, et al. Characteristics of individuals with congenital and acquired deaf-blindness. Journal of Visual Impairment & Blindness. 2009;103(2):93-102.

10. Wittich W, Watanabe DH, Gagné J-P. Sensory and demographic characteristics of deaf-blindness rehabilitation clients in Montréal, Canada. Ophthalmic and Physiological Optics.2012;32(3):242-51.

11. Brennan M, Bally SJ. Psychosocial adaptations to dual sensory loss in middle and late adulthood. Trends in Amplification. 2007;11(4):281-300.

12. The National Consortium on Deaf-Blindness. The 2007 National Child Count of Children and Youth who are Deaf-Blind. Monmouth, Oregon: The National Consortium on Deaf-Blindness; 2008.

13. Admiraal RJH. Changes in the aetiology of hearing impairment in deaf-blind pupils and deaf infant pupils at an institute for the deaf. International Journal of Pediatric Otorhinolaryngology. 2000;55:133-42.

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14. Schiariti VM, C. Hoube, SJ & Synes, AR. Severe retinopathy of prematurity and visual outcomes in British Columbia: a 10-year analysis. Journal of Perinatology. 2008;28:566-72.

15. Sanlaville D, Verloes A. CHARGE syndrome: an update. European Journal of Human Genetics . 2007;15(4):389-99.

16. Verloes A. Updated diagnostic criteria for CHARGE syndrome: A proposal. American Journal of Medical Genetics Part A. 2005;133A(3):306-8.

17. The Charge Foundation ( TCS). About CHARGE. 2004 Available at http://www.chargesyndrome.org/about-charge.asp Accessed March 2013.

18. Scarola D. Making progress with Usher syndrome. Volta Voices. 2007;14(2):34-6.

19. Cohen M B-G, Luxon L. The changing face of Usher syndrome: Clinical implications. International Journal of Audiology. 2007;46:82-93.

20. Millan JM, Aller AM, Jaijo T, et al. An update on the genetics of Usher syndrome. Journal of Opthalmology. 2011;10:1155-63.

21. Kimberling WJ, Hildebrand MS, Eliot Shearer A, et al. Frequency of Usher syndrome in two pediatric populations: Implications for genetic screening of deaf and hard of hearing children. Genetics in Medicine. 2010;12(8):512-7.

22. Picard M. Children with permanent hearing loss and associated disabilities: Revisiting current epidemiological data and causes of deafness. The Volta Review. 2004;104(4):221-36.

23. Stillwaggon E, Carrier CS, Sautter M, McLeod R. Maternal serologic screening to prevent congenital toxoplasmosis: A decision-analytic economic model. Neglected Tropical Diseases. 5(9):e1333.

24. Petersen E. Prevention and treatment of congenital toxoplasmosis. Expert Review of Anti-Infective Therapy. 2007;5(2):285-93.

25. Bristow BN, Shafir SC, Sorvillo FJ. Congenital Cytomegalovirus mortality in the United States, 1990-2006. Neglected Tropical Diseases.5(4):e1140.

26. Gaytant M SE, Semmekrot B, et al. Congenital Cytomegalovirus infection: Review of the epidemiology and outcome. Obstetrical and Gynecological Survey. 2002;57(4):245-56.

27. McMullan BP, Palasanthirian P, Jones C, et al. Congenital cytomegalovirus - time to diagnosis, management and clinical sequelae in Australia: opportunities for early identification. Medical Journal of Australia. 2011;194(12):625-9.

28. Communicable Diseases Network (CD). Vaccine preventable diseases in Australia, 2005-2007. Communicable Diseases Intelligence. 2010;34.

29. Best J. Rubella. Semin Fetal Neonatal Med. 2007;12(7):182-92.

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30. Hunt JL, Lumley J. Top end rural and remote indigenous women: An Australian population group vulnerable to rubella. Communicable Diseases Intelligence. 2004;28(4):499-503.

31. Tiong ACD, Patel MS, Gardiner J, Ryan R, et al. Health issues in newly arrived African refugees attending general practice clinics in Melbourne. Medical Journal of Australia. 2006;185(11/12):602-6.

32. Chen D. Young children who are deaf-blind: Implications for professionals in deaf and hard of hearing services. The Volta Review.2004;104(4):273-84.

33. Stoll BJ, Hansen NI, Bell EF, Shankaran S, Laptook AR, Walsh MC, et al. Neonatal outcomes of extremely preterm infants from the NICHD Neonatal Research Network. Pediatrics. 2010;126(3):443-56.

34. Marret SP, Marchand-Martin L, Picaud J-C, Hasco J-M, Arnaud C, Roza J-C, et al. Brain injury in very preterm children and neurosensory and cognitive disabilities during childhood: The EPIPAGE Cohort Study. One.8(5).

35. Hack M, Taylor G, Drotar D, Schluchter M, et al. Neurodevelopment and predictors of outcomes of children with birth weights of less than 1000 g: 1992-1995. Archives of Pediatrics & Adolescent Medicine. 2000;154(7):725-31.

36. Mwaniki MK, Atieno M, Lawn JE, Newton CRJC. Long-term neurodevelopmental outcomes after intrauterine and neonatal insults: a systematic review. The Lancet. 2012;379(9814):445-52.

37. Gogate P, Gilbert C, Zin A. Severe visual impairment and blindness in infants: Causes and opportunities for control. Middle East African Journal of Ophthalmology.18(2):109-14.

38. Cooke RWI, Foulder-Hughes L, Newsham D, Clarke D. Ophthalmic impairment at 7 years of age in children born very preterm. Archives of Disease in Childhood - Fetal and Neonatal Edition. 2004;89(3):F249-F53.

39. Li Z, Zeki R, Hilder L & Sullivan EA. Australia's Mothers and Babies 2010. Canberra: AIHW; 2012.

40. Joyce A, Hutchison M. Western Australia’s Mothers and Babies, 2010: Twenty-eighth Annual Report of the Western Australian Midwives’ Notification System. Western Australia: Department of Health; 2012.

41. Schneider JM, Gopinath B, McMahon CM, Leeder SR, Mitchell P, Wang JJ. Dual sensory impairment in older age. Journal of Aging and Health. 2011;23(8):1309-24.

42. Australian Bureau of Statistics (ABS) Population projection. Australian Government. Canberra. 2008. Available at http://abs.gov.au/Ausstats/abs@nsf/mf/3222.0 Accesssed March 2013.

43. Valios N. Dual sensory impairment in older people. Community Care. 2007:34-5.

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44. Chia E, Mitchell P, Rochtchina E, Foran S, Golding M, Wang J. Association between vision and hearing impairments and their combined effects on quality of life. Archives of Ophthalmology. 2006;124(10):1465-70.

45. Harada S, Nishiwaki Y, Michikawa T, Iwawaw S, Nakano M, Takebayashi T. Gender difference in the relationships between vision and hearing impairments and negative well-being. Preventative Medicine. 2008;47(4);433-437.

46. Capella-McDonnall ME. The effects of single and dual sensory loss on symptoms of depression in the elderly. International Journal of Geriatric Psychiatry. 2005;20(9):855-61.

47. Jee J, Wang JJ, Rose KA, Lindley R, Landau P, Mitchell P. Vision and hearing impairment in aged care clients. Ophthalmic Epidemiology. 2005;12(3):199-205.

48. LeJeune BJ, Steinman B, Mascia J. Enhancing socialization of older people experiencing loss of both vision and hearing. Generations. 2003;27(1):95-98.

49. Gauchard GrC, Deviterne D, Guillemin F, Sanchez Js, Perrin PP, Mur J-M, et al. Prevalence of sensory and cognitive disabilities and falls, and their relationships: A community-based study. Neuroepidemiology. 2006;26(2):108-18.

50. Saunders G, Echt K. Dual sensory impairment in an aging population. ASHA Leader. 2011;16(3):5-7.

51. Lupsakko T, Mäntyjärvi M, Kautiainen H, Sulkava R. Combined hearing and visual impairment and depression in a population aged 75 years and older. International Journal of Geriatric Psychiatry. 2002;17(9):808-13.

52. Crews JE, Campbell VA. Vision impairment and hearing loss among community-dwelling older americans: Implications for health and functioning. American Journal of Public Health. 2004;94(5):823-9.

53. Heine C, Browning CJ. The communication and psychosocial perceptions of older adults with sensory loss: A qualitiative study. Ageing and Society. 2004;24:113-30.

54. Landers J, Kleinschmidt A, Wu J, Burt B, Ewald D, Henderson T. Prevalence of cicatricial trachoma in an indigenous population of Central Australia: the Central Australian Trachomatous Trichiasis Study (CATTS). Clinical & Experimental Ophthalmology. 2005;33(2):142-6.

55. Roper KG. Prevalence of Trachoma in Aboriginal communities in the Katherine Region of the Northern Territory in 2007. Medical Journal of Australia. 2008;189(7):409.

56. Australian Institute of Health and Welfare (AIHW). Eye Health in Aboriginal and Torres Strait Islander people. Canberra: AIHW; 2011.

57. Taylor HR, Keeffe JE, Vu HTV, Jie Jin W, et al. Vision loss in Australia. Medical Journal of Australia. 2005;182(11):565-8.

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58. Australian Institute of Health and Welfare (AIHW). The Health and Welfare of Australia's Aboriginal and Torres Strait Islander People, an Overview 2011. Canberra: AIHW; 2011.

59. Acuin J. Chronic suppurative otitis media. BMJ Clinical Evidence 2007; 02:507.

60. O'Leary S, Triolo R. Surgery for otitis media among Indigenous Australians. Medical Journal of Australia. 2009 191(9);565-568.

61. Meuwese-Jongejeugd A, van Splunder J, Vink M, Stilma JS, van Zanten B, Verschuure H, et al. Combined sensory impairment (deaf-blindness) in five percent of adults with intellectual disabilities. American Journal on Mental Retardation. 2008;113(4):254-62.

62. Newsam H, Walley RM, McKie K. Sensory impairment in adults with intellectual disabilities - An exploration of the awareness and practices of social care providers. Journal of Policy and Practice in Intellectual Disabilities. 2010; (3):211-20.

63. Australian Bureau of Statistics (ABS) Customised report 2010; 2012.

64. Council of Australian Governments meeting (COAG) 2008. Available at http://www.coag.gov.au Accessed March 2013.

65. Australian Institute of Health and Welfare ( AIHW). Disability Support Services 2009-10. Canberra: AIHW; 2011.

66. Disability, ageing and carers, Australia: Summary of Findings 2003. 2004 Available at http://www.abs.gov.au/ausstats/abs@nsf/0/> Accessed March 2013.

67. Qu, L. Edwards, B. Gray, M. Aging parent carers of people with a disability. Canberra: Australian Institute of Family Studies; 2012.

68. Barnett S. Communication with deaf and hard-of-hearing people: A guide for medical education. Academic Medicine. 2002;77:694-700.

69. Lock E. A workshop for medical students on deafness and hearing impairments. Academic Medicine. 2003;78(12):1229-34.

70. Raina PW, M. Massfeller, H. The relationship between sensory impairment and functional independence among elderly. BMC Geriatrics. 2004;4(3).

71. Desai MP, L. Lentzner, H. Robinson, K. Trends in vision and hearing among older Americans. Centers for Disease Control and Prevention: The Aging Trends Series; 2001.

72. 2010-2020 National Disability Strategy: An initiatve of the Council of Australian governments. Canberra: Commonwealth of Australia; 2011.

73. Capella-McDonnall ME. Employment Among Older Adults with Combined Hearing and Vision Loss. Journal of Applied Rehabilitation Counselling. 2008;39(3):3-9.

74. Australian Bureau of Statistics (ABS) A profile of carers in Australia 2008. Available at http://abs.gov.au/Ausstats/abs@nsf/mf/4448 Accessed March 2013.

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7. Appendices

Appendix 7.1: Major Causes of Deaf-Blindness according to the Oklahoma Deaf-Blind Technical Assistance Project (downloaded from http://www.ou.edu/okdpb/mcauses.htm)

Hereditary Syndromes and Disorders

Aicardi Syndrome Marshall Syndrome Alport Syndrome Maroteaux-Lamy Syndrome (MPS VI) Alstrom Syndrome Moebius Syndrome Apert Syndrome (Acrocephalosyndactyly. Type 1)

Monosomy 10P

Bardet-Biedl Syndrome (Lawrence Moon-Biedl)

Morquio Syndrome (MPS IV-B)

Batten Disease NF 1- Neurofibramatosis (von Recklinghausen Disease)

CHARGE Association NF 2 – Bilateral Acoustic Neurofibramatosis Chromosome 18, Ring 18 Norrie Disease Cockayne Syndrome Optico-Cochleo-Dentate Degeneration Cogan Syndrome Pfieffer Syndrome Cornelia de Lange Prader-Willi Cri’ du chat Syndrome (Chromosome 5p-syndrome)

Pierre-Robin Syndrome

Crigler-Najjar Syndrome Refsum Syndome Crouzon Syndrome (Craniofacial Dysotosis) Scheie Syndrome (MPS I-S) Dandy Walker Syndrome Smith-Lemli-Opiz (SLO) Syndrome Down Syndrome (Trisomy 21 syndrome) Stickler Syndrome Goldenhar Syndrome Sturge-Weber Syndrome Hand-Schuller-Christian (Histiocytosis X) Treacher Collins Syndrome Hallgren Syndrome Trisomy 13 (Trisomy 13-15, Patau Syndrome) Herpes Zoster (or Hunt) Trisomy 18 (Edwards Syndrome) Hunter Syndrome (MPS II) Turner Syndrome Hurler Syndrome (MPS I-H) Usher I Syndrome Kearns-Sayre Syndrome Usher II Syndrome Klippel-Feil Sequence Usher III Syndrome Klippel-Trenaunay-Weber Syndrome Vogt-Koyanagi-Harada Syndrome Kniest Dysplasia Waardenburg Syndrome Leber Congenital Amaurosis Wildervanck Syndrome Leigh Disease Wolf-Hirschom Syndrome (Trisomy 4p) Marfan Syndrome Other

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Pre-Natal/Congenital Complications Post-Natal/Non-Congenital Complications

Congenital Rubella Asphyxia Cytomegalovirus (CMV) Infections Fetal Alcohol Syndrome Meningitis Hydrocephaly Severe Head Injury Maternal Drug Use Stroke Microcephaly Tumours Neonatal Herpes Simplex (HSV) Chemically Induced Other Other Related to Prematurity Undiagnosed

Complication of Pre-maturity No Determination of Etiology

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Appendix 7.2: Results from AIHW data cubes for those described as having a sensory disability (those individuals with a primary disability of speech, hearing, vision and deafblind) using disability support services in 2009.

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78 |

Pa

ge

Ta

ble

A1:

Pers

ons

with

a s

enso

ry d

isabi

lity

by a

ge a

nd g

ende

r.

M

ale

Fem

ale

Not s

tate

d To

tal

n

%

n %

n

%

n %

0-9

year

s 2,

892

66.2

1,

475

33.8

0

0 4,

367

100

10-1

9 ye

ars

998

60.5

65

2 39

.5

0 0

1,65

0 10

0

20-2

9 ye

ars

1,22

2 59

.1

845

40.9

0

0 2,

067

100

30-3

9 ye

ars

1,00

4 49

.1

1,04

2 50

.9

0 0

2,04

6 10

0

40-4

9 ye

ars

1,26

3 51

.7

1,18

2 48

.3

0 0

2,44

5 10

0

50-5

9 ye

ars

1,28

2 52

.9

1,14

1 47

.1

0 0

2,42

3 10

0

60 y

ears

and

ove

r 4,

026

38.4

6,

461

61.6

5

0.04

10

,492

10

0

Tota

l 12

,687

49

.8

12,7

98

50.2

5

0.02

25

,490

10

0

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79 |

Pa

ge

Ta

ble

A2: P

erso

ns w

ith a

sen

sory

disa

bilit

y by

age

and

Indi

geno

us a

nd N

on-I

ndig

enou

s ba

ckgr

ound

.

In

dige

nous

No

n-In

dige

nous

No

t sta

ted

Tota

l

n

%

n %

n

%

n %

0-9

year

s 23

5 5.

6 3,

818

91.7

10

9 2.

6 4,

162

100

10-1

9 ye

ars

100

6.3

1442

90

.7

47

3.0

1,58

9 10

0

20-2

9 ye

ars

96

4.8

1804

91

.5

72

3.7

1,97

2 10

0

30-3

9 ye

ars

69

3.6

1,70

2 88

.4

155

8.0

1,92

6 10

0

40-4

9 ye

ars

89

3.8

2,15

0 91

.5

112

4.8

2,35

1 10

0

50-5

9 ye

ars

73

31.6

2,

120

91.5

12

4 5.

4 2,

317

100

60 y

ears

and

ove

r 87

0.

9 8,

171

84.3

1,

430

14.8

9,

688

100

Tota

l 74

9 3.

1 21

,207

88

.3

2,04

9 8.

5 24

,005

10

0

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80 |

Pa

ge

Ta

ble

A3:

Pers

ons

with

a s

enso

ry d

isabi

lity

by a

ge a

nd e

mpl

oym

ent s

tatu

s.

Em

ploy

ed

Unem

ploy

ed

Not i

n th

e la

bour

forc

e

Not s

tate

d To

tal

n

%

n %

n

%

n %

n

%

10-1

9 ye

ars

194

20.2

32

0 33

.4

170

17.7

27

4 28

.6

958

100

20-2

9 ye

ars

810

39.2

73

4 35

.5

208

10.1

31

5 15

.2

2,06

7 10

0

30-3

9 ye

ars

767

37.5

58

9 28

.8

187

9.1

503

24.6

2,

046

100

40-4

9 ye

ars

896

36.6

83

4 34

.1

253

10.3

46

2 18

.9

2,44

5 10

0

50-5

9 ye

ars

849

35.0

73

7 30

.4

304

12.5

53

3 22

.0

2,42

3 10

0

60 y

ears

and

ove

r 54

1 5.

2 33

8 3.

2 3,

324

31.7

6,

284

59.9

10

,487

10

0

Tota

l 4,

057

19.9

3,

552

17.4

4,

446

21.8

8,

371

41.0

20

,426

10

0

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Appendix 7.3: Technical Appendix on the ABS 2009 Survey of Disability, Ageing and Carers2

Introduction

The 2009 Survey of Disability, Ageing and Carers (SDAC) was conducted throughout Australia from April to December 2009.

The aims of the survey were to:

Measure the prevalence of disability in Australia. Measure the need for support of older people and those with a disability.

Provide a demographic and socio-economic profile of people with disabilities, older people and carers compared with the general population.

Estimate the number of and provide information about people who

provide care to older people and people with disabilities.

The survey collected the following information from the three target populations:

People with a disability – information about their long-term health conditions, need for and receipt of assistance, use of aids and equipment such as wheelchairs and hearing aids, and participation in community activities.

Older people(i.e. those aged 60 years and over) – information about

their need for, and receipt of assistance, and participation in community activities.

People who care for persons with a disability and older people –

information about the type of care they provide, the support available to them, and the characteristics of carers and some of the effects that the caring role has on their lives.

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Scope

The scope of SDAC was persons in both urban and rural areas in all states and

territories, living in both private and non-private dwellings (including persons in cared-

accommodation), but excluding:

diplomatic personnel of overseas governments;

persons whose usual residence was outside Australia;

members of non-Australian defence forces (and their dependants)

stationed in Australia; and

persons living in very remote areas.

Survey Design & Data Collection

Multi-stage sampling techniques were used to select the sample for the survey. After

sample loss, the household sample included approximately 27,600 private dwellings

and 200 non-private dwellings, while the cared accommodation sample included

approximately 1,100 establishments.

After exclusions due to scope and coverage, the final sample comprised 64,213

persons for the household component and 9,470 persons for the cared-

accommodation component.

Data Collection

The household component covered persons in:

Private dwellings such as houses, flats, home units and townhouses.

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Non-private dwellings such as hotels, motels, boarding houses, short –

term caravan parks, and self-care components of retirement villages.

Household component

Data for the household component of the survey were collected by trained

interviewers, who conducted computer –assisted personal interviews.

Where possible, a personal interview was conducted with people identified in any of

the above populations. Proxy interviews were conducted for:

Children aged less than 15 years.

Those aged 15 to 17 years whose parents did not permit them to be

personally interviewed.

Those with a disability that prevented them from having a personal

interview.

People with a disability were asked questions relating to help and assistance needed

and received for communication, mobility, self-care, cognition or emotion, health care,

household chores, property maintenance, meal preparation, reading and writing tasks,

and transport activities. They were also asked questions relating to their computer

and Internet use and participation in community activities. Those aged 15 to 64 years

were asked about employment restrictions.

People aged 60 years and over without a disability were asked questions about need

for, and receipt of, help for household chores, property maintenance, meal

preparation, reading and writing tasks and transport activities. They were also asked

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questions relating to computer and Internet use and participation in community

activities.

Persons who confirmed they were the primary carer of a person with a disability or an

older person were asked about the assistance they provided, the assistance they could

call on, and their employment experience. They were also asked to complete a self-

enumeration form which collected information about their attitudes to, and experience

of, their caring role.

Estimates

Estimates (numbers and percentages) with RSEs less than 25% are considered

sufficiently reliable for most purposes. However, estimates with larger RSEs are

included and preceded by an asterisk (e.g.*3.9) to indicate they are subject to high

SEs and should be used with caution. Estimates with RSEs greater than 50% are

preceded by a double asterisk (e.g.**1.2) to indicate that they are considered too

unreliable for general use.

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LMITATIONS AND RESTRICTIONS

Table of limitations, Restrictions, Activities and Tasks

To identify whether a person has a particular type of limitation or restriction, the SDAC collects

information on need for assistance, difficulty experienced, or use of aids or equipment to perform

selected tasks. Below are listed the tasks associated with each type of limitation and restriction.

LIMITATION OR RESTRICTION,

Specific limitation or restriction,

Core activity limitations

ACTIVITY TASKS

Communication Understanding family or friends

Being understood by family or friends

Being understood by strangers

Mobility Getting into or out of bed

Moving about usual place of residence

Moving about a place away from usual residence

Walking 200 metres

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Walking up and down stairs without a handrail

Bending and picking up an object from the floor

Using public transport

Self-care Showering or bathing

Dressing

Eating

Toileting

Bladder or bowel control

Schooling or employment restrictions

Schooling Unable to attend school

Attends a special school

Attends special classes at an ordinary school

Needs at least one day a week off school on average

Has difficulty at school

Employment Permanently unable to work

Restricted in the type of work they can or could do

Need, or would need, at least one day a week off work on average

Restricted in the number of hours they can, or could, work

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Requires special equipment or modified work environment

Needs ongoing assistance or supervision

Would find it difficult to change jobs or get a preferred job

Needs assistance from a disability job placement program or agency

LIMITATION OR RESTRICTION

Other activities

ACTIVITY

Health Care Foot care

Taking medications or administering injections

Dressing wounds

Using medical machinery

Manipulating muscles or limbs

Reading or writing Checking bills or bank statements

Writing letters

Filling in forms

Transport Going to places away from the usual place of residence

Household Chores Washing

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Vacuuming

Dusting

Property maintenance Changing light bulbs, taps, washers or car registration stickers

Making minor home repairs

Mowing lawns, watering, pruning shrubs, light weeding or planting

Removing rubbish

Meal preparation Preparing ingredients

Cooking food

Cognition or emotion Making friendships, interacting with others or maintaining

relationships

Coping with feelings or emotions

Decision making or thinking through problems

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Appendix 5: DS NMDS Collection Definitions and Scope 65

Scope of the DS NMDS collection

The DS NMDS collects information on services and service users (see below) where

funding has been provided, during the specified period, by a government organisation

operating under the NDA. An agency (see below) may receive funding from multiple

sources. Where an agency is unable to differentiate service users and/or staff

according to funding source (that is, NDA or other), it is asked to provide details of all

service users and staff (for each service type). It is also important to note that the DS

NMDS collection only provides for information on one informal carer per service user

(see below for definition of carer).

Agency

An organisation that delivers one or more service types provided under the NDA

(service type outlets). Agencies are usually legal entities, and are generally responsible

for providing DS NMDS data to jurisdictions. Where an agency operates only one

service type outlet, the service type outlet and the agency are one and the same.

Carer (informal)

An informal carer is a person such as a family member, friend or neighbour who

provides regular and sustained care and assistance to the person requiring support.

This includes people who may receive a pension or benefit associated with their caring

role, but does not include people, either paid or voluntary, whose services are

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arranged by formal service organisation. Informal carers can be defined as primary if

they help with one or more of the activities of daily living: self-care, mobility or

communication.

Primary disability

The primary disability group is one that most clearly expresses the experience of

disability by a person. The primary disability group can also be considered as the

disability group causing the most difficulty to the person (overall difficulty in daily life,

not just within the context of the support offered by this service).

Service

A support activity delivered to a service user, in accordance with the NDA. Services

within the scope of collection are those for which funding has been provided, during

the specified period, by a government organisation operating under the NDA.

Service type and service group

The support activity that is provided to the client. The DS NMDS classifies services

according to the service type, arranging services into seven distinct categories known

as service groups. They are: accommodation support; community support; community

access; respite; employment; advocacy, information and alternative forms of

communication; and other support. Within each of these service groups are various

service types.

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Service type outlet

A counting unit managed by an agency that delivers one type of NDA service from a

discrete location. If an agency provides, for example, both accommodation support

and respite services, it is counted as two service type outlets. Similarly, if an agency

provides more than one accommodation support service type (for example, group

homes and attendant care) then it is providing ( and is usually separately funded for)

two different service types; that is, there are two service type outlets for the agency.

Service user

A person with disability who receives a service provided under the NDA. A service user

may receive more than one service over a period of time or on a single day.

Identifying Australians who live with deafblindness and dual sensory loss

A Clear View

www.senses.org.au

Prepared for Senses Australia by Paula Dyke, July 2013

Tel 08 9473 5400 Fax 08 9473 5499TTY 08 9473 5488

Email [email protected]

11 Kitchener Avenue, Burswood WA 6100 PO Box 143, Burswood WA 6100

www.senses.org.au www.deafblindinformation.org.au

identifying australians who live with deafblindness and dual sensory loss

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