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Accessible services for New Zealand adults with hearing loss A discussion paper prepared for the New Zealand Audiological Society Inc August 2004 Greville Consulting PO Box 26 506, Epsom, Auckland 1030, New Zealand Phone: +64 27 281 3072; Fax: +64 9 625 8546; email:[email protected] ; www.grevilleconsulting.co.nz Greville Consulting Accessible audiological services CONTENTS Executive summary ............................................................................................. 3 Current situation................................................................................................. 4 Population .................................................................................................. 4 Socio-economic factors associated with hearing loss ................... 5 Services for hearing impaired people ................................................ 5 Funding for hearing aids ....................................................................... 7 The hearing aid subsidy ............................................................ 7 Enable/Accessable ..................................................................... 8 ACC ................................................................................................. 8 War Pensions................................................................................ 8 WINZ ............................................................................................ 9 Issues .......................................................................................................10 Effects of untreated hearing loss ........................................10 Disparities between hearing loss surgically correctable /non-correctable ........................................................................10 Efficacy of hearing aids........................................................... 11 People with congenital/prelingual hearing loss ...................12 Bureaucratic categorisation of hearing loss/deafness within disability framework ....................................................12 Provision for the elderly ..........................................................13 Adult cochlear implant candidates ........................................13 International comparisons ...............................................................................15 Australia ..................................................................................................16 United Kingdom ......................................................................................18 United States .........................................................................................19 Europe...................................................................................................... 20 References ........................................................................................................21 Appendix: Cases falling through the gaps................................................... 22 page 2 Greville Consulting Accessible audiological services Executive Summary Approximately 10% of the total New Zealand population reports a hearing loss of some degree. This rate is slightly higher than other Western countries, mostly because of our Maori & Pacific populations. An estimated 90,000 adults use hearing aid/s – a hearing aid fitting ratio of approximately 28%. Hearing loss is associated with low income level, and low employment rates. Audiological services for hearing impaired adults are fragmented and poorly funded. There are major shortages of audiologists employed in the public health system. Audiology, however, has flourished within the private sector. The quality of audiology services is high by international standards. Funding for hearing aids and assistive listening devices has not kept up with inflation, with a gradual erosion of the relative value of the universal hearing aid subsidy from 100% to less than 10% of hearing aid costs. Selection criteria under the Enable/Accessable schemes have been chosen for physically disabled people, & are not relevant for most hearing impaired people. People with hearing loss do not identify themselves as being disabled. page 3 Greville Consulting Accessible audiological services Current situation Population Approximately 10% of the total New Zealand population reports a hearing loss of some degree (Greville, 2001). A total of about 320,000 people over the age of 15 years have self-reported hearing loss. Approximately 18,500 adult New Zealanders were fitted with hearing aids in 2003 – equivalent to about 6% of the total hearingimpaired/deaf population. If it is assumed that adults replace their hearing aids every 7 years, this equates to a total of about 90,000 adult hearing aid wearers – a hearing aid fitting ratio of approximately 28%. This compares favourably with the US, where it is 22%, and Canada, where it is around 17%. Current data suggest that only about 40% of hearing aid fittings are binaural. This compares unfavourably with the Australian situation, where about 2/3 of fittings are binaural. Approximately 90,000 more men than women have hearing loss. The most likely reason for this discrepancy (also reported in other Westernized countries) is noise exposure, whether occupational or recreational (or both). Presumably many in this section of the population would be eligible for funding for hearing aids by ACC. The non-noise attributable population with hearing loss would therefore be about 130,000 in the 15-64 years age-group, and about 95,000 over the age of 65 years. page 4 Greville Consulting Accessible audiological services Socio-economic factors associated with hearing loss Hearing loss is associated with low income level, and low employment rates. 40% of people with hearing loss are eligible for a Community Services Card, compared with 31% of people with no hearing loss. 23% of people with hearing loss have an annual family income below $20,000 (1991 figures), compared with 18% of people with no hearing loss. 19% of people with hearing loss have an annual family income above $40,000 (1991 figures), compared with 28% of people with no hearing loss. 49% of people with hearing loss are not in the labour force (1991 figures), compared with 35% of people with no hearing loss. Services for hearing impaired people Audiological services for hearing impaired adults are fragmented and poorly funded. Publicly funded services have traditionally been based within hospitals in New Zealand. This has created problems over the years because of the fundamental differences in service provision between audiology services and more mainstream doctor-nurse structured services. Through the various changes to the health system, funding for services has been eroded, to the point where funding is adequate only for services provided to ORL (ENT) page 5 Greville Consulting Accessible audiological services clients. Compounding the funding issues, management within the public health system has seldom been supportive of audiology services, because of its essential differences from the normal model - the ambivalent position of “allied health professionals” within the hospital system - & a subsequent lack of understanding of issues. One of these issues is the financial management required, because of the high unit cost of hearing aids – public hospitals are seldom set up to handle the challenges associated with this. These two main factors have resulted in major shortages of audiologists employed in the public health system. Probably at least partly because of the problems within the public health system, audiology has flourished within the private sector. While the quantity of audiological services in New Zealand is problematic in some parts of the country, the quality is high by international standards. New Zealand audiologists are well trained, are quick to utilise new technologies, and have a high level of interest in ethics. page 6 Greville Consulting Accessible audiological services Funding for hearing aids Concurrently with service shortages, funding for hearing aids and assistive listening devices has not kept up with inflation. The hearing aid subsidy The only across the board funding system for adults, the hearing aid subsidy, was originally an entitlement, until the introduction of the RHAs around 1990. Despite the assurances of the four RHAs that they would continue to purchase equivalent services, not all Crown Health Enterprises remained vigilant, and in some areas (one example is Canterbury), funding for hearing aid subsidies was lost. The subsidy originally covered the cost of a simple NZ-produced hearing aid (₤12 + the cost of an earmould) when it was introduced in 1947. Over the years the value of the subsidy was only occasionally increased, with a gradual erosion of its relative value from 100% to less than 5%. The subsidy was increased from $89.10 to $198 in 2003. This amount is now sufficient to contribute towards private audiological services (the public services typically having prohibitive waiting times –often exceeding 2 years - for adults requiring hearing aid/s who tend to be given the lowest priority), leaving the client to fund the entire cost of the hearing aid/s. page 7 Greville Consulting Accessible audiological services Enable / Accessable These agencies provide funding for disabled individuals, including limited funds for those with hearing loss. The selection criteria, however, have been chosen for physically disabled people, & are not relevant for most hearing impaired people, who tend to be older people, and frequently with no other handicaps. The criteria focus around working, tending for children, or remaining living independently. For many elderly people, hearing aids enable continuing participation in society, and enhanced quality of life. This would not be sufficient for them to obtain funding through these funding streams. Case examples of people refused funding are included in the Appendix. ACC People with noise-induced hearing loss or hearing loss resulting from an accident can be funded for audiology services and hearing aids, on the referral of a medical specialist. War Pensions People with hearing loss resulting from war experiences can be funded for audiology services and hearing aids, on the referral of a medical specialist. page 8 Greville Consulting Accessible audiological services WINZ Provides loans (a total of up to $1,000) for devices such as spectacles, dental work, as well as hearing aids. Even if the person has no need for funding for the other devices, $1,000 does not cover the purchase price of a hearing aid. page 9 Greville Consulting Accessible audiological services Issues Effects of untreated hearing loss In the US the National Council on the Aging carried out a major study on untreated hearing loss in 1999. They found poor communication, greater social isolation, withdrawal, reduced sensory input, depression, anger, and severely reduced overall psychological health among hearing impaired people not using hearing aids. Many other studies have replicated these findings. There is some evidence (primarily from animal studies) that neural damage may occur if an ear remains unstimulated for too long. The implication from this body of work is that hearing aid use should not be delayed too long after the onset of hearing loss, because the quality of the outcome may be limited by the history of auditory deprivation. Disparities between hearing loss surgically correctable/non-correctable A person whose moderate degree of hearing loss is surgically correctable will typically be eligible for fully-funded surgery within New Zealand’s public health system. It is inequitable that a person whose site of pathology means that surgery will not be appropriate is required to meet the cost of ameliorating the hearing loss. Not only do they have to pay for their hearing aid/s, but in over half of public audiology clinics, partpage 10 Greville Consulting Accessible audiological services charges and/or mark-ups are also made to cover service costs. Efficacy of hearing aids Dutch studies have shown that hearing aid fitting is highly cost-effective compared with other health interventions. A paper by Joore et al (2003) showed a base-case cost of outcome on the EuroQol of €15 807/QALY. In an earlier paper, in 1999, the authors found that hearing aid fitting for a person 65-69 years of age rated similarly to breast screening for cost/benefit, and for an equivalent gain, was 25% the cost of knee replacement, and 15% the cost of peritoneal dialysis. A wide-spread survey of US hearing aid users over the last ten years has found 62-71% satisfaction among users of hearing aids less than a year old (Kochkin, 2002). The National Council on Aging (1999) reported that the areas most improved by the use of hearing aid/s are: 50% report an improvement in social life, ability to join in groups, and relationships at home. 40% report improvements in their self-confidence, personal safety, relationships at work, and sense of independence. 30% report improved emotional/mental health and mental/cognitive ability. 20% report improved physical health. page 11 Greville Consulting Accessible audiological services People with congenital/prelingual hearing losses Clients with congenital hearing loss are provided with fully-funded hearing aids until they leave school or tertiary training under the Special Aid Fund. As adults, if their hearing losses are moderate or worse, they face significant costs equipping themselves with hearing aids. Frequently they have low incomes, because of the lower average educational achievement of people with congenital hearing loss. Some are currently able to access the Enable / Accessable schemes, but many fall outside the criteria and face extreme financial hardship or functioning at a lower level than optimal, reducing their quality of life in many ways. Others are clearly within the criteria for the Enable / Accessable schemes, but lack the communication skills to make a successful application. Case examples are included in the Appendix. There needs to be a seamless transition in audiological service provision when deaf students leave school. This is currently lacking, and many young deaf adults are unsupported vis-a-vis their hearing needs. Bureaucratic categorisation of hearing loss/deafness within disability framework People with hearing loss do not identify themselves as being disabled. This leads to problems eg with the design of the last two censuses, which, presumably because of the bias of the Ministry of Health’s subdivision into health and disability, only asked questions relating page 12 Greville Consulting Accessible audiological services to hearing loss of people who first identified themselves as being disabled. The data produced by the 1996 and 2001 censuses underestimated the hearing impaired population by over a third (approximately 140,000 people). Moreover, by this design flaw, the rate of multiple handicaps among those with hearing loss has been greatly over-estimated. This may have resulted in appropriate policy development, on the assumption that people with other handicaps in addition to hearing loss should be prioritised over those with no other handicaps. Provision for the elderly For the few people who fit into the ACC or War Pensions schemes, hearing aid/s can be fully funded. However, for those that do not – and elderly women are particularly poorly provided for - there may be no financial assistance available apart from the hearing aid subsidy, which was originally designed to provide adequate, though not “top-of-therange”, hearing aid/s for all those needing them. This provision needs upgrading so that elderly New Zealanders can continue to experience a reasonable quality of life. Adult cochlear implant candidates Severely or profoundly hearing impaired adults who would benefit from cochlear implants and who receive little or no assistance from hearing aid/s, have been denied funding in New Zealand, because of prioritisation given to children. page 13 Greville Consulting Accessible audiological services This raises serious issues of inequity, for a small group of people, but one with significantly reduced quality of life as a consequence of this policy. page 14 Greville Consulting Accessible audiological services International comparisons New Zealand has a slightly higher prevalence of hearing loss than other Western countries. This phenomenon is probably largely related to the higher propensity towards hearing loss of Maori & Pacific Island peoples. The effect is ameliorated somewhat by the lower life expectancy of these population groups, but there remains a difference of about 1.5% in the rates found in New Zealand and the US (where very similar methodologies have been employed). The hearing impaired in New Zealand have not been well served by the state services over the last decade and a half. A coherent framework for policy development has been lacking, and funding streams have subsequently fragmented. For example, the National Audiology Centre was originally set up by the Department of Health as a Head Office unit, with policy responsibilities as well as responsibilities for local service provision. During the health reforms, these responsibilities were reduced to a few key outputs in a small national contract. There has been a loss of the national policy instituted in the 1940s whereby all New Zealanders had the right to access state funding sufficient to purchase a simple hearing aid/s. Primarily this has been by bureaucratic inertia, with successive governments failing to ensure that funding levels kept up with inflation. More recently, because of this failure, alternative page 15 Greville Consulting Accessible audiological services funding has been sought from physical disability funding streams, subject to entirely different values-based criteria, which are unsuitable for hearing impaired people, the majority of whom are elderly, and relatively rarely with other handicaps. Australia In Australia, low-income elderly adults are entitled to funding for hearing aids, the amount varying with the complexity of their hearing needs. Not only are they funded for the hearing aid/s purchase and fitting costs, but also for maintenance of their hearing aids & provision of batteries. In 2002/3 the Australian Government spent A$120 million (an equivalent for the NZ population level would be $24 million) on hearing aid provision & hearing assessments for eligible adults (Australian citizens or permanent residents who are 21 years or over & pensioners, sickness beneficiaries, holders of a repatriation card, a dependent of a person in any of these categories, members of the Australian Defence Force, or persons undergoing a vocational rehabilitation programme). In addition to the hearing aid provision costs, A$33 million (NZ equivalent level: $6.6 million) was spent on hearing aid maintenance & batteries. The Australian Office of Hearing Services also funds hearing aids for children & special groups such as aboriginal & outback communities. New Zealand performs well in provision of hearing aids for children, but is providing a much lower level of funding for hearing impaired adults. page 16 Greville Consulting Accessible audiological services If eligible Australians choose a hearing aid more expensive than the basic model/s available within the scheme, they pay the difference (the “TopUp” scheme). Any provider who meets specified criteria may access the scheme. Problems with the Australian scheme The scheme is extremely bureaucratic. Clients have to seek prior approval from the Office of Hearing Services (OHS) before they can even have their hearing assessed. The core of the scheme revolves around competitive contracting for supply of hearing devices. This has the advantage to the Government of keeping the unit cost of devices low, but the downside is that quality is sacrificed. Hearing aids available under the scheme are seldom “state of the art”, but are older technology which tends to be cheaper, and which is specifiable under the longterm contracts entered into. Very low prices are paid to hearing practitioners for service provision – this results in services who contract with OHS having to limit time spent with clients, with a consequent reduction in service quality. A recent national survey found that overall 30% of OHS-funded clients used their hearing aids for more than 8 hours daily on average, and a further 26% used theirs for between 5 and 8 hours daily. In a survey carried by practices under the Ear Associates umbrella in Australia, 66% of privately funded clients (who tend to be fitted with high-technology hearing aids) have recently been page 17 Greville Consulting Accessible audiological services found to use their hearing aids more than 8 hours daily, a further 15% using them for 5-8 hours. This improved performance can be related to a combination of better devices together with better service unrestricted by unrealistic financial limitations. Many practitioners are now choosing not to supply hearing aids through the OHS scheme. United Kingdom Hearing aids are supplied free to patients referred by their GP to the NHS. Direct referral to audiologists is generally made for people 60 years or over, but others may have to wait to see an ORL surgeon first. A limited range of devices is available – digital technology is only available in BTE (behind the ear) models, and no ITC (in the canal) or CIC (completely in the canal) devices are available. ITE (in the ear) devices are only available in standard-shapes, to be fitted in to custom-made earmoulds. Problems with the British scheme Public audiology services are extremely poor quality, as are the devices supplied. This results in low efficacy of hearing aid/s – a recent normative study by Stephens in Wales found that 55% of NHS hearing aid wearers used their devices less than 5 hours a day on average. Digital hearing aids have only been made available recently in parts of the country, as part of a national “modernisation” programme. Overall, 23% of those with hearing page 18 Greville Consulting Accessible audiological services loss own hearing aids. Waiting times in public hospitals for hearing aid fitting extend up to 2 years – recent increases have been blamed on the modernisation programme, with high demand for digital hearing aids, and staff shortages. United States Schemes vary considerably from state to state. There is currently a Bill before the Federal House of Representatives to provide a tax credit of up to US$500 per hearing aid for people over 55 years, or their dependents. In the US, about one-third of all people with hearing aids received third-party payments of some kind. Problems with the US situation Relatively few people (22%) with hearing loss use hearing aid/s. 30% of those with hearing loss who do not use hearing aid/s cite financial constraints as the core reason. Those who do use hearing aids face average out of pocket expenses of US$1,400 per hearing aid. page 19 Greville Consulting Accessible audiological services Europe In western Europe, most hearing aids tend to be dispensed by hospital clinics, and are usually fully funded by the state. Services are generally much more adequately staffed than in New Zealand. In Denmark, waiting times for hospital audiology clinics are published on the internet for clients to access. Waiting times vary from 6 weeks to 60 weeks. In Finland, waiting times vary from 2 months to 2 years. In Norway, the average wait for hearing aids is 7 months. The major limiting factor in Norway is said to be the lack of trained staff. Over the entire European Union, 24% of those estimated to have hearing loss have sought help. In the Scandinavian countries, 40% of those with hearing loss own hearing aids. In the Netherlands hearing aids are provided to over 30% of those who could benefit from them. Germany, France, Switzerland and Italy average about 23-24%. In less developed European countries such as Spain and Poland hearing aids are accessed by only about 7% of the hearing impaired populations. page 20 Greville Consulting Accessible audiological services REFERENCES Greville, KA. Hearing impaired and deaf people in New Zealand; population numbers and characteristics. Greville Consulting Report www.grevilleconsulting.co.nz October 2001 Joore, MA, van der Stel H, Peters, HJM, Boas, GM & Antenuis, LJC. The cost-effectiveness of hearing aid fitting in the Netherlands. Arch Otolaryngol – Head & Neck Surg 129 297-304 2003 Kochkin, S. MarkeTrak VI: 1—year customer satisfaction trends in the US hearing instrument market. Hear Rev 9 October 2002 National Council on Aging. The consequences of untreated hearing loss in older persons. The National Council on Aging Report www.ncoa.org May, 1999 Stephens, D. The International Outcome Inventory for Hearing Aids and its relationship to the Client-Orientated Scale of Improvement. Int J Aud 41 42-47 2002 page 21 Greville Consulting Accessible audiological services Appendix Cases falling through the gaps Mrs A is an 85-year-old superannuitant with a moderate to severe hearing loss who was turned down for funding by ACC. She had previously been fitted with hearing aids, but was left without any functional device, and had struggled for a long time with no hearing help. She lives with her very elderly husband on very limited income. Ms B is a 23-year-old part-time student with asymmetrical hearing loss caused by middle ear disease, incapable of further surgical help. Because she studies part-time, she is ineligible for Accessable funding, & is now too old for the Special Aid Fund. She is completing her last year of tertiary education & is finding it difficult to participate in a lecture situation when questions come from her right side. She gets lost in work groups when more than one person talks. She is convinced that her education is suffering because of her hearing loss. Ms C is a 33-year-old nurse in part-time employment. She has a congenital hearing loss which is deteriorating over time. Her current hearing aid is ten years old, and is no longer providing her with much help because her hearing loss has changed. Her hearing is worse in the middle frequencies, and because of the audiometric configuration, she will require a more sophisticated hearing aid. She does not work sufficient hours to qualify for Accessable funding. page 22 Greville Consulting Accessible audiological services Mr D is an 80-year-old superannuitant with a profound hearing loss on the left, and no measurable hearing on the right. He is currently using two hearing aids more than 10 years old, which were given to him by his brother some years ago, and are inadequate for hi hearing needs. His wife is ill and undergoing radiotherapy treatment. He has been struggling and frustrated with his hearing limitations. Mrs E is a 65-year old woman on the Domestic Purposes Benefit, with a severe hearing loss. She is unable to pay for repairs to her current hearing aid, let alone a replacement. She is heavily involved in Maori health councils in a provincial town and finds it difficult to contribute in meetings because of her hearing loss and inadequate amplification. Mrs F is a 40-year-old sickness beneficiary with a severe to profound hearing loss. She recently lost her hearing aid, which was bought with a WINZ loan she is still paying off, and WINZ will not lend her any more money. Mrs G is a 43-year-old sickness beneficiary with a severe to profound congenital hearing loss. Her current hearing aid is over 5 years old, and no longer meeting her requirements. She lives with her husband who is currently unemployed and looking for work. He is also profoundly deaf. She needs a hearing aid for safety reasons. page 23 Greville Consulting Accessible audiological services Mrs H is a 48-year-old beneficiary with a long-standing hearing loss from chronic otitis media. ENT opinion is that further surgery would not improve her hearing. A recent car accident left her with expensive dental bills and she cannot afford a hearing aid. She cares for her nephew and is unable to work. Mr I is a 46-year-old man with a severe hearing loss who currently cares for his sick wife and 18-month-old child. The family has very little income, and they need to purchase expensive medication for his wife, but he does not qualify for Enable funding. Mrs J is a 77-year-old superannuitant with chronic middle ear problems causing a moderate hearing loss. She cannot be operated on any further. She struggles to hear even one-on-one conversations, and particularly group situations. She would love to use hearing aids, but cannot afford them. Ms K is a 49-year-old sickness beneficiary with an asymmetrical hearing loss. Her husband has recently died, and she is still repaying a loan for his funeral. WINZ will not advance her funds because she owns a rental property, which she is trying to sell, but is having legal difficulties in doing so. She is totally cash-strapped, and struggling with a significant hearing loss. page 24 Greville Consulting Accessible audiological services Mrs L is a pensioner living alone, with a faulty hearing aid, which is unable to be repaired. Her hearing problems are resulting in social isolation. She does not have sufficient funds to purchase a new hearing aid, and she is ineligible for funding from all of the state funding schemes, apart from the hearing aid subsidy, which is woefully inadequate. Mrs M is severely deaf, and has worked in the same factory for 30 years. She fears approaching her employer for documentation verifying her place and hours of work in case she loses her job. She is unlikely in any case to receive funding under the Accessable scheme because she does not meet current priority criteria. She will almost certainly lose her job if she cannot obtain new hearing aids. page 25