Partners in Impact
The Needs and Support of People who are Deafened: An Independent Report
Rose Casey-Challies August 2008
The Needs and Support of People who are Deafened: An Independent Report
Acknowledgements
A number of people gave up their valuable time to ensure that this report was grounded on credible data and to provide personal insight into the area of people who are deafened. This was greatly appreciated and has ensured that the following is a well informed report, built on the expertise and experiences of people genuinely supportive of deafened people and their closest networks. Many thanks goes to all those interviewed (who remain confidential) and a number of people who have provided additional information and context including:
• • • •
Jackie Graham Jane Atkinson Val Tait Lorraine Gailey
• • • •
Owain Green Linda Ogden Dominic Stiles Peter Ellis
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First Published by Partners in Impact 2008 © Durham Deafened Support
Partners in Impact
This report was supported by Durham Deafened Support and the Lloyds TSB Foundation for England and Wales.
Executive Summary
Definition of APHL or People who are Deafened
APHL stands for Acquired Profound Hearing Loss. People with APHL are commonly known as deafened people or people who are deafened. Technically, a deafened person is someone with a hearing loss of at least 90dB averaged over 3 speech frequencies 500Hz, 1000Hz and 2000Hz in the 'better' ear (Tait, 2008). Unlike people who are born with deafness, a deafened person is someone who becomes deaf suddenly (can be overnight) or gradually. It can happen to young and older adults and with no prior warning, and can result from a range of causes including illnesses such as meningitis, viral infection or Menieres Disease, head injury, noise damage or surgery for acoustic neuroma. However it can also happen for no apparent or identifiable reason (The LINK Centre for Deafened People, 2008).
Premise + Method
The premise for this report was to identify the needs of deafened people, particularly social needs, through the collation of previous research and by speaking to a variety of deafened people about their experiences. It also served to identify what support was available, including how appropriate this support is to people on a day to day basis. It was important that the approach to this report included: • • • •
The collection of credible evidence and a commitment to establishing areas of significant data and data gaps. The exploration of wider issues than just the specific physical needs of deafened people and an openness to the 'real' needs of people on a daily basis. A strategic approach to analysis upholding integrity of data with clear areas for development using the intelligence gathered and the expertise of the Consultant. Establishing clear conclusions and practical recommendations for going forward.
Publication and Research Review Interview with People who are Deafened and their Close Networks Interviews with Support Services Expert Analysis
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• • • •
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The methodology supported the premise and was set out to maximise data and to build on previous work. The methodology consisted of:
Executive Summary
Need
The needs of deafened people are wide ranging and their severity can be underestimated. The culminated research findings and results of the interviews found specific deafened needs both physical and social. Physical difficulties can often extend beyond tinnitus (buzzing or constant noise in the ear) and severe balance issues, to associated ill health which may or may not be related to why the person lost their hearing. There is a need to collate more data on associated ill health as much medical data appears to be gathered on a lack of hearing difficulties with little on associated ill health for deafened people either as a result of APHL or coinciding with APHL.
... it is a massive loss and most suffer from a lack of understanding
It was found however that physical needs often pale in comparison with the social needs of the person. Someone who loses their hearing suffers a significant loss, difficult to comprehend unless you have been through the experience.
Being a fundamental part of interacting in the community, hearing loss can shut down an entire life time of family and work life - sometimes overnight. It is a massive loss and most deafened people suffer from a lack of understanding and empathy with what they face - and this is in addition to their own comprehension of what has happened. This does not seem to change no matter what age the person is when they lose their hearing. The need is immediate and requires one-to-one expert support relevant to the person's situation. From the interviews it was clear that a deafened person not only has to face challenges in their relationships with loved ones but also on a day-to-day basis accessing even basic, fundamental services can be fraught with difficulties. A lack of understanding, particularly by those providing essential services such as doctors, banks, post offices, corner stores/supermarkets, can be traumatic for a deafened person. Being yelled at, spoken to as if the person is stupid, ignored and scoffed at, are all experiences of a deafened person. This has to change.
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Simple steps can be taken to make a person's life a much more positive experience. This awareness has to increase within all communities.
Executive Summary
Need continued
People who are deafened are often marginalised through a lack of awareness. This may be because a loss of hearing cannot be seen, that some low volume sounds can be magnified while others completely disappear (people can believe the person is egging up their deafness when in fact their hearing can be majorly distorted as well as lost), or it could be because it is often linked with older people who unfortunately can be marginalised as a wider group of people. Understanding the basics of an acquired profound hearing loss and using simple alternatives to communication are vital to going forward.
... simple steps to engaging more effectively can take no time at all...
It was found that there is a recognised gap in awareness of what it is like to be deafened, particularly those that provide essential services, often through government funded organisations. Simple steps to engaging more effectively can take no time at all, make a major difference to communication, ensure respect is maintained and improve relationships for the long term. Financial support is required to ensure that awareness campaigns are carried out and that appropriate training is given by expert trainers to those providing essential services.
Support
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There is a need for far better data on deafened people and their close networks, to ensure that those people who need help are being supported.
Partners in Impact
There are an estimated 150,000 adults in the UK who are deafened (The LINK Centre for Deafened People, 2008) across all ages. Arguably this number is a low estimate, as the experience of practitioners interviewed are there are a significant number of people who never seek help and as a result not being recognised within the population. In addition this number does not include the people affected by someone who acquired a profound hearing loss; many more families and friends are significantly affected by the loss (Hallam, Sherbourne, Ashton, Gailey, Corney and Priestlely, 2005).
Executive Summary
Support continued
It was found that although there are organisations that support deaf people there are few that specifically support the needs of those who are deafened, particularly on a one-to-one basis. This one-to-one support has been critical to people going forward with their lives. Without one-to-one support accessing even basic services is difficult. Such a large number of organisations rely on the telephone and/or face-to-face interaction to communicate. When someone has just lost their hearing even communication with their closest loved ones is difficult, let alone a stranger with little time or inclination to make an effort. And the results from one-to-one support have been staggering - complete reintegration into the community, families reunited, and people back into work. One of the most common responses from interviewees to the difference of one-to-one support was that it transformed their lives, and they don't know what they would have done otherwise. And the genuineness of these responses were truly moving. Those organisations that do provide support struggle to secure financial support even though they are only touching a small proportion of the deafened population. This needs to change.
... forming new friend networks has proved to be critical...
It was also found that each of the organisations identified across the UK providing one-to-one support to a person who has acquired a profound hearing loss also provided significant assistance for the people who are close to them, particularly partners and children. The support and opportunities for socialising by deafened people and their close networks, particularly partners, has also proven to be an important component to sustaining well being. Being around people who have been through the same experiences and forming new friend networks has proved to be critical to the deafened person's ability to get their life back.
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For those organisations providing support it is important that the social impact of their services is measured, not just using quantitative measures but a framework that is grounded in qualitative measures that clearly show the difference made. For funders it is important that they seek out organisations that show their impact and recognise the work they do within the context in which they work.
Partners in Impact
A commitment to securing better data is required for the population of people who are deafened. In addition funding needs to be made available by statutory and non-statautory funders appropriate to the population and one-to-one support, essential to the wellbeing of a significant population in the UK
Executive Summary
County Durham continued
There is an estimated 1,250 deafened people and an estimated 3,750 closely affected (e.g. children, partners, parents of deafened people).
Consett . Durham .
Peterlee .
Addressing major issues of loss, changes in relationships and everyday living all apply to Bishop Auckland . those who live in County Durham. One noticeable addition to those deafened in County Barnard Durham is geographical barriers. Castle . A higher than average dispersed population, including many rural villages, add to accessibility of basic services and need to be accounted for in the case of deafened support. It also increases the need for opportunities to meet with other deafened people and accessible training opportunities. County Durham also reflects the wider UK in the collection of data on deafened people. Little data was found and the data that exists cannot easily be attributed to deafened people but rather to 'deaf' and/or 'hard of hearing'. More data needs to be collected on deafened people and their close networks (e.g. families, carers) by all support agencies. Stronger data analysis and links between the County Council, the Primary Care Trust and Durham Deafened Support would help to ensure that the data is utilised to full effect. This could be achieved with appropriate information sharing agreements or through an individual led pathway of access to support. Support services for deafened people in County Durham are provided by three charitable organisations, Durham Deafened Support, Co.deaf, and Durham Disability Voice. Durham Deafened Support provide one-to-one support for deafened people and their close networks and link with the County Durham Primary Care Trust in their delivery. Co.deaf promote, teach and campaign for deaf awareness and deaf blind communication, while Durham Disability Voice provide a voice for all disabilities including deafness and deafened people.
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There is a need to widen the support provided to deafened people and their close networks on a one-to-one basis. This means building the capacity of providers, particularly Durham Deafened Support who are an established provider, and ensuring that specific data about deafened people and their close networks is collected across the County by both charitable and statutory support providers. This data could then be most effectively utilised by all parties through formal links and the continued building of partnership working.
Partners in Impact
There are other organisations that provide sign language and lipspeaking training however these tend to be for the wider deaf and hearing population and are separate to and do not specifically address the needs of those who are suffering from acquired profound hearing loss.
Executive Summary
Durham Deafened Support
As a one-to-one support provider of people who are deafened Durham Deafened Support (DDS) sit quite uniquely within the area of deafness. Across the UK a comparable regional model was not found however there are organisations that provide elements of their service range, most particularly training support. This however is not the core focus of DDS, driven by the experiences of a person who was deafened and had to go through a traumatic process of loss alone, DDS aims to support those who are deafened as quickly as possible following their loss. The DDS approach is proactive and person centred; they genuinely put the person who is deafened at the forefront and address their needs either directly or through supporting them to other sources of support. This has meant that considerable time has been taken to build relationships with complementary support and in particular with statutory support agencies. More can be done here but the willingness by the Primary Care Trust to engage with the DDS is promising. This relationship building is not to be confused with the contracting out of their own services. The DDS clearly provides support that otherwise would be extremely challenging (if not impossible) to deliver by statutory bodies and in reality would not exist. The DDS one-to-one support offers a friendly, unintrusive lifeline and is built on trust and an expertise in deafened life changes. It is also based on a sound community spirit where people supported are quick to recommend and endorse the organisation's services. DDS have maximised their strengths and addressed needs proven to make a difference to the individual and their families. Opportunities to meet and socialise, and to access skill development appropriate to their needs in a safe, positive environment, have enabled people to move forward and in many cases become active role models. However the rate of referral is increasing and this is of some concern. There is an immediate need for the organisation to secure funding to ensure that their integrity as a supporter is not compromised by limited services. One-to-one support, particularly in people's homes at the immediate onset of loss, is vital and an increase in their capacity, i.e. more expert people employed, needs to be addressed. A medium term investment in the employment of additional expertise would ensure an infrastructure that will in the long term provide a much more costeffective one-to-one service across the County.
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Partners in Impact
With a strong volunteer support group and network with the Volunteer Centre within East Durham Trust (in itself a model of good practice in partnership working) specific funding for oneto-one expertise, and for this model to be replicated, will be a sound investment in the physical and mental well-being of deafened people for the long term.
Executive Summary
Recommendations
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Increased funding of one-to-one charitable support of deafened people and their families/friends across the UK By government and independent funders to existing providers with clearly identified expertise. For one-to-one support that complements Primary Care Trust support but cannot effectively be provided by them i.e. independent and holistic approach to the person's needs.
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Increased funding of one-to-one charitable support of deafened people and their families/friends specifically within County Durham By government and independent funders to existing providers with clearly identified expertise. For one-to-one support that complements Primary Care Trust and County Council support but cannot effectively be provided by them i.e. independent and holistic approach to the person's needs. To include recognition of dispersed populations and rural community access issues.
3.
Stronger links built between deafened support providers Particularly between charitable organisations to enable lobbying for more widely available oneto-one support, and between charitable organisations, Primary Care Trusts and local government agencies to increase awareness of where joined up support can be accessed.
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Better collection and linkage of data by existing support providers Particularly by Primary Care Trusts who have access to large amounts of data but may not collate to provide useful information on deafened people. To include data collection of associated ill health (including mental health) by deafened people and their close networks. To include in County Durham, stronger links between the County Council, the Primary Care Trust and Durham Deafened Support.
5.
Commitment of funding to the replication of existing models of practice to address an increasing demand To fully utilise existing proven models of practice to ensure there is a national network of effective support that links with Primary Care Trusts and local government agencies. Specific funding for replication to include investment in the roll out of delivery models.
To ensure that awareness stems beyond basic access of technology to ensuring people's approaches, attitudes and skills are appropriate to deafened people. To include recognition by funders of those organisations that provide identifiable social expertise and impact that is not limited to quantified data but based on credible qualitative assessments.
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Commitment of funding to the development of awareness campaigns and training for essential service providers
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6.