The cost of sight loss.
The Equality and Human Rights Commission report, Is Wales Fairer? (1), notes that the disparity between disabled people and non-disabled people is increasing in many areas of life in Wales. Poorer educational attainment and low levels of employment are reported and this is a trend that goes through life because the inability to find and retain work creates a greater dependency on the lifeline of disability benefits to meet the basic needs of daily existence. The tax and welfare reforms imposed by central Government have ‘lowered many disabled people’s living standards even further, and they are more likely to be living in poverty.’ The report also suggests that ‘disabled people are being denied their right to independent living and in many cases are not experiencing the progress seen for other groups.’
Are disabled people’s finances really being hit so hard? Evidently. A growing body of research is supporting the view that disabled people are more likely to experience lower standards of living than non-disabled people due to the impact of the additional costs of support to meet their needs. Scope has published The Disability Price Tag 2019 (2) stating that ‘on average, a disabled person’s extra costs are equivalent to almost half of their income (excluding that spent on housing).’ This is echoed in the Thomas Pocklington Trust’s research findings on the additional costs of sight loss (3): ‘the budget for a severely sight impaired person of pension age, living alone, is 73% more than for a single pension age person without a visual impairment: £135.61 a week extra on top of a minimum income standard of £185.15 a week (not including housing costs).’
The Scope report suggests that the drivers of these extra costs are threefold: the need for expensive specialist goods and services that non-disabled people do not require; the greater
use of mainstream goods and services such as fuel; and the higher cost of mainstream services such as insurance. The TPT research findings state that half of the extra cost is for regular support in the home such as help with cleaning and dealing with paperwork, and most of the remainder is to pay for transport, social and leisure costs. ‘In order to participate socially, severely sight impaired people of pension age can incur a higher cost for some specialized activities, and feel it is important to recognise the extra help of a companion by paying for meals, drinks and for part of their holiday costs’. Social participation is crucial to avoid social isolation and loneliness for all of us. It also offers up opportunities to volunteer and find work. While most of us take social engagement for granted, for disabled people it has an extra cost.
Barriers to digital inclusion.
Digital media and services are something which most people enjoy. We expect to find up-to-the-minute information on transport, news, opening times, and so on available through our phones and tablets. Many disabled people, however, experience barriers to participating freely because devices and software may not be accessible to someone who, for example, relies on synthetic speech to navigate applications. For many people with sight loss, there are additional costs of purchasing equipment and software that aid access. Swansea University looked at the usage of digital media by people with sensory impairment (6) and found there were financial barriers to digital inclusion. The researchers found costs of £500 upwards for products to support them - over and above the cost of the computer and software package. These additional costs may be applied to different devices as well. However, these adaptations are necessary to gain equal access to the social media, news, retail and employment opportunities that non- disabled people take for granted.
So, where is the money coming from?
TPT looked at matching income with needs (4) and found that the barriers to employment – employment that would help to meet material, social and disability-related needs - result in a greater dependency on state benefits. These benefits are vital ‘but they can be difficult to access, stressful to claim and fall short of meeting the cost of a minimum living standard.’ Importantly, the report concludes that ‘the risk of and burden of vision loss are experienced disproportionately by those who are already socially disadvantaged’. Also, when examining the relationship between wealth, social status and developing visual impairment (5) the risk of at least moderate sight loss was higher for those in the two poorest wealth categories and for those in the two lowest social status categories. In other words, we must consider the negative impact arising from social and economic deprivation on the prevalence of sight loss and its impact on an individual. For example, in looking at the issue of the change of vision over time, the report found that ‘those from poorer backgrounds, and those who perceived themselves as of lower social status were more likely to be in the deteriorating trajectories and less likely to be in the stable, excellent or good categories.’
PIP and problems with assessment.
Personal Independence Payment is being rolled out across the UK. It essentially replaces the Disability Living Allowance and those on DLA can expect to be transferred to PIP via a process that includes an assessment. The assessments in Wales are carried out currently under the control of Capita, a private company commissioned by the Department of Work and Pensions. There is anecdotal evidence that these assessments are conducted in a way to trick people into giving information that would reduce the level of financial support offered. For example, the claimants' answers to questions such as 'how are you today?' - said in the manner of a general greeting - are used as part of the assessment data set. A response of 'I'm good, thanks' would be taken as an indication of their wellbeing and potentially used to reduce the level of support.
Wales Council of the Blind fed into a BBC report on the incorrect use of Snellen and LogMAR charts in PIP assessments (10). For people with sight loss (who constitute 0.8% of all PIP clients), PIP assessors have been known to use the Snellen or Logmar Charts - the eye charts for assessing sharpness of vision - to conduct a sight test. There are problems with this. First of all, visual function involves more than just visual acuity - it has to consider field of vision, colour perception, involuntary eye movement and so on. To use the chart as a perfunctory measure of a person's visual function is lazy and insufficient. The TPT findings in Changes in vision in older people: causes and impact observes that 'it is possible that objective measures of visual acuity may not reflect the reality of visual function', and even that is when the test is carried out under ideal conditions - not, as has been reported, in the home with inconsistent lighting and shorter distances than should be adopted. Secondly, the distance at which the chart is used and the lighting conditions are scientifically defined. The assessors are known to be using it incorrectly, creating false results that give the impression that the person's vision is better than it really is, leading to reduced levels of payment or none at all. It is clear that qualified optometrists ought to be engaged in the process of assessing vision where this needs to take place. However, it is questionable as to whether it needs to be assessed at all, since it is likely that the person would have evidence in the form of a Certificate of Visual Impairment from an eye clinic or registration with their Local Authority sensory support team. The latter, combined with a letter from a qualified Rehabilitation Officer for VI, should be sufficient evidence of the impact of sight loss on an individual's daily activities.
Citizens Advice has collated evidence provided by their advisors and clients on their experience of PIP and ESA assessments (7). The findings are that 'assessment reports are often contentious. 92% and 81% of advisors report seeing inaccuracies in PIP assessments and Work Capability Assessments (WCAs) respectively. Many advisors cite inaccurate assessment report conclusions ranging from unjustified extrapolations from assessors' observations to wholly contested versions of events. Clients often tell our advisors that these inaccuracies tend to overstate their capabilities.'
The appeals process, called Mandatory Reconsideration (MR), is relied upon by a large number of claimants as a way of getting what they feel to be the correct level of support. 'For all but a minority of applications, Mandatory Reconsideration (MR) confirms the initial decision. Official statistics show 65% of PIP appeals result in a changed award. '...high appeal success rates support claims from our advisers that reports and decisions are regularly inaccurate. The design and administration of the assessments, evidence collection and decision making process are not consistently effective.' Indeed, the more cynical view might be that PIP assessments are being geared towards downgrading the level of support in the hope that the decision would not be challenged, and that fewer challenges would result in better money-saving targets.
So, it appears that the processes of assessment are geared towards a lowering of levels of support. The reduction of these crucial allowances has a serious impact on the ability to meet basic daily needs.
Employment.
The TPT findings identify factors that can help to find or sustain employment. Help from VI organisations, volunteering, Permitted Work and, importantly, a supportive employer as
well as support from Access to Work. Volunteering is a stepping stone to paid employment for some people but, unfortunately, the support for employees from Access to Work does not extend to volunteering, so the additional costs of support for disabled people in these essential developmental opportunities have to be met by the hosting organisation, the individual, or simply not met at all, making the experience less representative of ideal working conditions.
Access to Work provides crucial support to disabled people to ensure they retain employment. However, in 2016 Wales Council of the Blind and RNIB Cymru with partner organisations conducted a survey into employees' experiences and impressions of the Access to Work scheme in Wales, particularly in the light of changes to the way it is structured and run. The survey revealed deficiencies throughout five key aspects of the service and these prompted a set of recommendations. The five areas were: contact with clients; provision of information; advisor skills and knowledge; assessments; and payments, reviews and personalised budgets.
Three years on ...
WCB recently repeated the survey to see if the problems persist or have been ameliorated or solved, and has published a report on its findings (8). The review covers the same areas as the original report and essentially considers people's responses in comparison to three years ago.
The Access to Work Scheme is an essential ingredient in the support available to disabled people in employment. It helps to create an even playing field in the workplace by financing support to meet the access needs of disabled people. This, ideally, takes away the disincentive to employ a disabled person by making cost-neutral changes to the job in the form of access technologies, transport costs and PA fees. With the
support in place the employer ought not to perceive the access problems as a burden on the role in terms of cost and time, thus placing the disabled person on an equal footing in terms of employability. That's the ideal. But it requires a service that is responsive to the demands of the workplace being placed on the employee. The survey found this responsiveness to be lacking for many people, leaving them reliant on the goodwill and patience of the employer at best or, at worst, finding them unable to fulfil the role.
Another survey (9) conducted in England into the Access to Work scheme there yielded a phrase that highlights a key problem with the scheme as a whole. One respondent described it as 'a shop with blacked out windows', a powerful metaphor for the manner in which AtW keeps its cards close to its chest, creating a mystique around the scope and depth of the support it can offer. WCB's survey reveals that there are still strong perceptions that the support on offer is somewhat hidden from the client and, importantly, potential clients. This, coupled with barriers to accessing the service due to badly designed forms and taxing methods of claiming payments, leads to a service that looks as if it doesn't want to maximise the support it gives to clients. It appears, rather, to be discouraging claimants in order to save money – hardly surprising in these times of austerity in public finances.
However, there are changes that can be made that need not impose a financial burden the service directly, yet would make a considerable improvement in the delivery to the client. The quality of communication between client and advisor is crucial for maintain a strong relationship built on an understanding of the client's particular circumstances. This builds up trust and enables the client to feel confident that they can request changes to support when the job demands it. This communication also extends to the assessor, who is engaged by Access to Work to listen to the client and advise them of possible solutions to access problems. These assessments are now largely undertaken over the phone and this is clearly a problem insofar as there is not the detailed understanding of the particular workplace requirements.
All this points towards a change in culture that seems to have stemmed from the service-wide reforms that occurred in 2011. No longer does the client have a single advisor with whom a relationship can be built, and no longer is detailed work being carried out by the assessor in the client's place of work to identify the best and - in the long term - most cost-effective solutions.
It must be remembered that the scheme is considered by most to be extremely good when it is working to the client's needs. Comments were made that reiterated the scheme's enduring importance and value, making it all the more frustrating when it is not delivering the goods. Inflexibility with the distribution of payments, such as not responding quickly enough to the variable requirements for travel within work, puts pressure on the employee to find money to pay for support out of their own pocket until the amount is agreed with - and processed by - AtW. Also, delays in agreeing and delivering the required support have placed clients under the goodwill of the employer in continuing to pay the worker until the support is in place. This can be for as long as four months. That kind of pressure and uncertainty undermines an employer's faith in the usefulness of the scheme and risks their developing an attitude of negativity towards employing disabled people in the future. That is not a desirable outcome of the service.
Trust emerged as an issue for some people. There was a sense that AtW would err on the side of caution and insist on demonstrations of proof. For instance, one respondent was asked to provide a bus pass as evidence that they couldn’t drive. Another said she was effectively being asked to prove she was still disabled – her condition was not going to get better.
Poor communication has resulted in people missing the renewal cycle, causing an unwelcome delay to the processing of further claims. One client was even asked to reapply from scratch because of a missed renewal date.
So, the Access to Work Scheme - an essential component in the accessibility programme - requires some systemic changes to make it work fully for disabled people and change the imbalance reported in 'Is Wales Fairer' that only 34% of disabled people are in employment compared with 73% of non-disabled.
This was a brief overview of some of the areas that impact financially on disabled people generally and people with sight loss specifically. It is evident that disabled people experience considerable additional costs to daily living but are less likely to be in employment to cover those costs. Furthermore, changes to the system of benefits and allowances make it harder to meet those additional costs. Another important consideration is that people who are socially disadvantaged are more likely to be experiencing deterioration in sight disproportionately to those who are better off.(1) Is Wales Fairer? Summary Report 2018, Equality and Human Rights Commission, 2018.. (2) The Disability Price Tag 2019, John, Thomas and Touchet, Scope 2019.(3) Sight Loss and Minimum Income Standards: the additional costs of severity and age, Research Findings No. 55, Thomas Pocklington Trust, Jan 2017.(4) Experiences of Living with Visual Impairment: Matching Income with Needs, Research Findings No. 58, Thomas Pocklington Trust, June 2018.(5) Changes in vision in older people: causes and impact, Research Findings No. 49, Thomas Pocklington Trust, September 2015.(6) Digital Media Usage of Sensory Impaired Users in Wales 2018, Wu, Lindsay et al, Swansea University, 2018.(7) PIP and ESA Assessment Inquiry: Evidence from Citizens Advice, Citizens Advice 2017(?).(8) How accessible is Access to Work for people with sight loss in Wales? - 3 years on, O. Williams, R. Bowers, June 2019.(9) Working Age Group Project online consultation report, Retina UK, 2019.(10) Wales Council of the Blind: 'Meaningless' sight test hits claims, BBC Wales report, https://www.bbc.co.uk/news/uk-wales-48682106, 2019. Video at: https://www.bbc.co.uk/programmes/p07dsqt2
This article originally appeared in WCB Roundup 34, 2019.