DeafHear.

ie Submission to the Department of Health and Children

Positive Ageing for Older Deaf and Hard of Hearing People

September 2009

1.0 Introduction DeafHear.ie is a national voluntary organisation providing and advocating for services for deaf and hard of hearing people and their families. Our vision is of an inclusive society where deaf and hard of hearing people are fully integrated, with equality of opportunity and participation. It is our role to make this vision a reality by promoting the equal rights of deaf and hard of hearing people and enhancing their life opportunities. DeafHear welcomes the opportunity to make this submission on the development of the National Positive Ageing Strategy. This submission focusses on the issues of relevance to people with a hearing loss who are getting older. For the vast majority of older people with a hearing loss, their hearing loss is an acquired loss that has resulted from a gradual deterioration of hearing ability, most commonly starting in middle age. The submission outlines in some detail the particular issues that arise for this group of people who must learn to adapt in later life to the onset of hearing loss. Finally, the submission outlines some ideas for enhancing a positive ageing strategy to assist those older persons who experience hearing loss and deafness in addressing lifes challenges and opportunities. 2.0 Positive Principles for Ageing Older citizens have the same rights as other citizens, and should have reasonable expectations that their needs as older citizens will be addressed equitably in relation to the needs of other citizen groups. The Minister has stated that that the strategy will be informed by the UN Principles on Ageing: Independence, Dignity, Self-Fulfillment, Participation and Care. 3.0 Prevalence of Hearing Loss As people get older, their hearing deteriorates. Thankfully for most people, this is a slow degeneration, and will not have a major impact on an individuals quality of life. However, for a significant number of people hearing loss does have a major impact on an individuals social, emotional, vocational and family life. 3.1 Congenital deafness: Approximately 2 children per thousand are born congenitally deaf, and by 3 years of age 3 children per thousand have a hearing loss. From early childhood these children will have used a combination of sign language, hearing aids, cochlear implants, lipreading and a variety of assistive technology to minimise the impact of hearing loss on their daily lives. It is estimated that there are approximately 5,000 deaf people whose primary and preferred means of communication is Irish Sign Language (ISL), and over 1,000 of this group are older people. For ISL users, the significant and frequent communication barriers encountered in daily living is a lifelong challenge spanning family life, education, employment, social and community activities.

3.2 Acquired hearing loss: As people get older, the prevalence of hearing loss increases significantly: by 50 years of age, over 40% of the population have some kind of hearing loss (over 450,000 people), while by 70 years of age, over 70% have a hearing loss (over 230,000 people). While most of these people have a relatively mild hearing loss, it is estimated that 20% of people over 50 years of age and almost 45% of people over 70 years of age have a moderate to profound hearing loss. A hearing loss of this magnitude will mean it is difficult or impossible to conduct conversations without the use of aids or coping strategies, such as hearing aids, induction loops, lipreading or sign language. 4.0 Impact of acquired hearing loss Communication is a fundamental element in everyones life. Without communication, our very nature as human beings would be lost. Learning, cooperation, friendship, sharing, enjoyment, happiness are all experiences dependent on an ability to communicate. While people with congenital hearing loss may use sign language and lipreading from a young age to communicate, many people who have an acquired hearing loss must make significant adjustments in their later years in order to continue to communicate with family, friends, colleagues and strangers. This is a challenge for many people spanning their social and personal lives, employment and access to services. 4.1 Social Life An acquired hearing loss can have a major impact on a persons life, particularly in relation to family relationships, social support and mental health. In a study entitled The Quality of Life of Older People with a Disability in Ireland (NCAOP,2007), older people identified opportunities to connect socially with families and friends (ibid,26) as central to their lives. The study found that older people with hearing loss were in the group scoring lowest on social functioning, indicating they had the most difficulty with engagement in social activities (ibid,28) and they found it extremely difficult and embarrassing when they could not follow conversations (ibid,32). It is important to note that while a hard of hearing person may be able to follow a conversation with another person reasonably well in a quiet environment, the same person may find it impossible and extremely frustrating to try to follow a conversation involving a number of people, or a conversation in a noisy environment such as a pub or a shop. This is why many deaf and hard of hearing people shy away from participating in social events, affecting their participation in family, social, communal, cultural and recreational activities. 4.2 Employment People with hearing loss experience difficulties in the workplace. Among the issues reported are how hearing loss can reduce significantly opportunities for promotion, result in communication difficulties in the workplace, and impact on an employees job satisfaction. Individuals can find that participation in work meetings becomes hugely challenging. In some circumstances, an acquired hearing loss can even result in the end of

an individuals career: a profoundly deafened lady had to retire as a physiotherapist because she could not hear what her patients were saying to her, and she could have caused further injuries inadvertently because she could not hear if the patients said particular movements were painful. People in professions requiring a lot of face to face communication, such as teaching, can have great difficulty in continuing to pursue their careers with an acquired hearing loss. DeafHear is aware of many older persons who retired early due to the onset of hearing loss. 4.3 Access to facilities and services Communication forms a fundamental element in accessing and availing of many basic and essential services. In a recent survey completed by DeafHear, on average 80% of deaf and hard of hearing people reported that they found communication difficult or very difficult in a range of environments, including hospitals, shops, banks, airports and Garda stations (DeafHear.ie, 2009). A survey of deaf and hard of hearing people in the UK found that in accessing GP services 24% had missed appointments, 30% of sign language users avoided going to their GP, and 35% of deaf and hard of hearing people were unclear about their condition, all because of communication problems (RNID, 2004). The following story reported in Hearsay, the newsletter of the Irish Hard of Hearing Association, serves to illustrate some of the progress made to date in improving access to services for deaf and hard of hearing people, while at the same time demonstrating the continuing frustration and embarrassment frequently endured by people with hearing loss. Im sure many of you reading this have the same problem that I have with hospitals. I seem to get sick quite often and have to go to hospitals. The seemingly endless waiting and wondering if I will be able to hear the nurse when my name is called out, has me a nervous wreck. Every time a nurse comes out with one of those folders in her hand Im on the edge of my seat staring at her, trying to lipread the name she calls out. I ask the receptionist to nod to me if its my turn, but she either forgets or goes off duty. Most hospitals now have a ticket dispensing machine. Your ticket has a number and when your turn comes your ticket number flashes on a monitor on the wall. This is very helpful, but in almost all cases its only to let you know its your turn to go to the reception desk. When you finally manage to answer all the questions the receptionist must ask, you must go back to your seat and wait for a nurse to call out your name, and thats the part that proves to be so difficult for a hard of hearing person because of all the different conversations going on around you. Ive tried asking the person sitting beside me to let me know when my name is called only for that person to be called before me and Im back to square one. On one occasion recently I arrived at the hospital at 8.30am, went to reception and then took my seat to wait my turn for a nurse to call me out. I was still waiting at 10.30am, so I thought there must surely be something wrong, so I went back to the reception desk to ask, and was told my name had been called out ages ago!! (Hearsay, 2009).

5.0 Older People with Hearing Loss: Addressing the needs As mentioned earlier, hearing loss can have a major impact on a persons quality of life, affecting an individuals independence, dignity, self-fulfillment, participation and care, namely the UN Principles on Ageing. A combination of technology and a universal design approach can play a significant role in alleviating the difficulties caused by hearing loss, and facilitate older people with hearing loss to live their lives in accordance with the principles of positive ageing. Combined with awareness and understanding of deafness and hearing loss among the wider public and service providers, the embarrassment felt by older people in accessing services and their hesitance in participating in social activities could be greatly reduced. A strategic integrated approach to public buildings, accommodation and direct service provision designed with the needs of older people and the wider population as a whole in mind, i.e. a universal design approach, is a key element in optimizing value for investment in infrastructure and services in terms of effective benefit to users, including older people. This section focuses on specific strategies and supports that could ameliorate the difficulties experienced by older people with hearing loss in their daily lives. 5.1 Accessing Public Services and Public Buildings The main issues affecting deaf and hard of hearing people in accessing services and buildings include orientation, information and direct communication. When there is a commotion I never understand what is going on. On the plane, the steward speaks on the microphone, I never understand what he/she is saying (DeafHear.ie, 2009) is typical of the experiences of older deaf and hard of hearing people. The following list of design and service actions, if adopted and enacted, would go a long way to alleviating the embarrassment and frustration many older people with hearing loss experience in hospitals, airports, shops etc. Provide orientation and service information in accessible formats. This includes providing good signage, ticketing systems, and visual scroll displays. Ensure good building design that allows for good lighting to facilitate lipreading and sign language communication; Provide some soft surface furnishings in areas where communication is essential and frequent: this absorbs sound echoes and helps reduce background noise; Ensure induction loops are installed and in use at information desks and where PA systems are in use. In many instances where loops are installed they are not in use because no one asked. Older people with hearing loss typically do not want to cause a fuss or draw attention to themselves by making such requests (which will invariably result in further communication difficulties). Service providers need to be aware of their responsibilities in this regard and to ensure that loop systems operate and conform to European Standards. Install integrated fire alarm systems that incorporate a flashing light as well as a sound alert system.

5.2 Supporting Communication in the Workplace The challenges for older people in the workplace in terms of hearing loss will be affected by the nature of the work and the demands involved. Again, technology can play its part, but much more will depend on the understanding and awareness of work colleagues: in the UK 55% of deaf and hard of hearing people said they felt socially isolated in work because of their deafness (RNID, 2006). Deaf Awareness Training Programmes can make a significant contribution to improving workplace experiences for people with hearing loss by increasing awareness among work colleagues of behaviours, strategies and technologies that assist communication and reduce social exclusion and isolation. Where people with hearing loss are working, employers should be encouraged to consider some or all of the following: Provide Deaf Awareness Training to all employees working with people with hearing loss: being aware of strategies to support communication for those with hearing loss can go a long way to reducing the social isolation experienced by workers with hearing loss. Such strategies include communicating in quiet and well-lit areas where possible, facing the person, speaking clearly, using gestures and not covering ones mouth. Vibrating alert pads can be used to alert employees with hearing loss of emergencies or work instructions; text messaging can also be useful. Flashing alerts, e.g. fire alarms, can address health and safety issues for employees with hearing loss. Induction loop systems can be invaluable for some employees with hearing loss in work situations such as one-to-one or group meetings. Where possible, provide access to alternative forms of communication, such as email, fax and text messaging.

5.3 Supporting Daily Living As mentioned earlier in this document, older people value continued social contact with family and friends as the most important aspect of their lives. However, older people with hearing loss are most vulnerable to isolation and reduced social contact. Again, technology and greater awareness can play its part, but also encouraging the preservation of hearing (for example through the use of hearing protection in the workplace and the avoidance of loud and prolonged noise,) can achieve health benefits into old age. Furthermore, encouraging people to seek intervention for the onset of hearing loss earlier could also have a long term benefits for people with hearing loss. It is generally known that people are more reticent in seeking a hearing examination than an eye examination, with people losing their hearing waiting on average 10 years before taking action (Davis et al, 2007). This exacerbates the impact of hearing loss for individuals. While the fitting of hearing aids is of significant benefit, the personal adjustment and habituation required (to get used to the hearing aids) is increased due to both the delay in seeking a diagnosis and the further deterioration of the hearing loss during the delay. In many instances,

people leave their hearing aids in a drawer, as the adjustment and habituation proves too difficult for them. DeafHear believes that adopting strategies supporting greater public awareness of hearing loss and its management would be of significant benefit to older people with hearing loss and their quality of life. Particular actions to support daily living for older people with hearing loss include: Developing public awareness of acquired hearing loss, its prevention and its management. Particular emphasis should be placed on early intervention, and free hearing screening should be offered to all aged over 55 years to encourage early diagnosis and intervention. Providing access to quality audiology services. Notwithstanding the delay in seeking intervention, many adults experience waiting list delays of up to a further 2 years to access HSE audiology and ENT services. Furthermore, DeafHear has received many reports from individuals who have been very dissatisfied at the service they received from private hearing aid dispensers, often at great expense. There is a need for a (long promised) review of HSE audiology services and the establishment of appropriate standards and regulation for this sector. Creating a care pathway for people with acquired hearing loss, including the promotion of Hearing and Communication Therapy programmes to support individuals at a personal level to develop coping strategies and manage their hearing loss. Issues addressed through such programmes include hearing aid management, lipreading skills, assertiveness and strategies to enhance communication. Providing greater access to assistive technology such as TV listening devices, loop systems and other communication aids for the home, involving grant schemes where necessary. While physical aids are more readily available to older people through OT services for example, communication aids are not, even though older people have indicated that social contact is more important in terms of their quality of life. Improving the level and quality of subtitling and sign interpreting of TV broadcasts. These issues are a constant source of complaint from deaf and hard of hearing people, which reflects their importance in reducing isolation and improving quality of life for older people. While some progress has been made in recent years in terms of subtitling by some broadcasters, there is still much room for improvement in terms of both quality and quantity of service. The level of sign interpreting of broadcasts provided is derisory at present. Ensuring that community services for older people, such as day centres and nursing homes, have access to appropriate Deaf Awareness Training and assistive technology to provide accessible services for service users with hearing loss. DeafHear is aware that literally tens of thousands of older people with hearing loss do not have an accessible smoke alarm at night. There are over 35,000 people in Ireland aged over 50 years with a severe to profound hearing loss: only a small fraction of these people have an adapted smoke alarm with a vibrating pad which would wake them at night in a fire emergency. Many people are blissfully unaware of this significant danger, as it does not occur to them that

Consideration should be given to supporting the development of assistive technology for deaf and hard of hearing for both public and private use (such as adaptive smoke alarms), within a universal design framework. Given that in the UK the incidence of hearing loss is likely to increase in the next 15 years by 1015% in population terms, simply because of our ageing population profile (Davis et al, 2007), and we are likely to experience a similar increase in the numbers of people with hearing loss, a universal design approach could reduce overall costs in the longterm, while increasing safety and accessibility.

5.4 Older Deaf People who use Sign Language While the main focus of this submission has been the large number of older people with acquired hearing loss, there are approximately 1,000 older congenitally deaf people who use sign language to communicate. While this group of people have lived with hearing loss all of their lives, facing the challenges of ageing combined with their lifelong deafness can be burdensome. In a recent survey conducted by DeafHear, over 80% of deaf people reported that going to hospitals resulted in difficult or very difficult communication for them. Older people have greater need to access services such as health services and hospitals, and the lack of sign language support in health settings in particular, places older deaf people at increased risk. Sign language users are twice as likely as hard of hearing people to avoid going to their doctor because of communication difficulties (RNID, 2004). Providing sign language interpretation for deaf people has always been limited by the number of interpreters available and the cost of providing interpretation. The lack of sign interpretation support in health settings such as GP surgeries and hospitals was the most common issue mentioned by older deaf people in a survey of their daily living experiences (DeafHear.ie 2009). Access to interpretation could be improved significantly by the use of internet based video technology that is extremely cheap and supports reliable sign language communication. The adoption of this technology for sign language provision could provide wider access to interpretation in GP surgeries and outpatient services at no net additional cost. This should be pursued by the relevant authorities without further delay.

6.0 Summary People are living longer, and a positive ageing strategy can contribute to improving the quality of life of older people. This submission highlights the challenges arising for older people with hearing loss, and the main issues may be summarised as follows: Hearing impairment of moderate degree in adults is a highly prevalent major public health problem with a large impact on peoples lives, which is left too late before access to services is achieved. One in ten people aged 55-74 years is substantially impaired on activity and causes participation restriction (handicap) in older people. Amplification gives substantial benefit to these people and this benefit can be realised by provision of good quality hearing aids to people with this high degree of need (Davis et al, 2007). A strategic approach to meeting the needs of older people with hearing loss includes greater public awareness, access to audiological, rehabilitative and technological support, and a universal design approach to buildings, facilities and services. To date, the evidence demonstrates that there has been a failure to develop adequate services and supports. For older people with hearing loss, this has resulted in considerable social exclusion and isolation, more acute even than that experienced by the general older population. DeafHear looks forward to a National Positive Ageing Strategy which provides the impetus and direction to make real progress on these issues for the benefit of all older people and society in general.

For further information on this submission contact: Brendan Lennon DeafHear.ie 01-8175711 www.deafhear.ie

References A Simple Cure: A national report into deaf and hard of hearing peoples experiences of the National Health Service. (Royal National Institute for the Deaf, London, 2004). Davis, A., Smith, P., Ferguson, M., Stephens, D. and Gianopoulos, I. Acceptability, benefit and costs of early screening for hearing disability: a study of potential screening tests and models. (Health Technology Assessment, Vol. 11, No. 42, 2007). Hearsay! (Irish Hard of Hearing Association, Dublin, Vol. 12, Autumn, 2009). Living in the Community: the experience of deaf and hard of hearing people. (DeafHear.ie, 2009). Murphy, M., OShea, E., Cooney, A. and Casey, D. The Quality of Life of Older People With a Disability in Ireland (NCAOP, Dublin, 2007). Opportunity Blocked. (Royal National Institute for the Deaf, London, 2006).

DeafHear.ie 2009

10