Personal Independence Payment and deafblind people: Learning the lessons from testing of the first draft assessment criteria in Summer 2011 This report outlines the experiences of deafblind people and family members involved in the testing of the Personal Independence Payment (PIP) assessment criteria between July and September 2011. It sets out some key recommendations to ensure that learning from this testing is taken into account during the development of the PIP assessment and its implementation. Contents Introduction Findings from the testing: accessibility Findings from the testing: the face-to-face assessment Key findings and recommendations Sense 101 Pentonville Road London N1 9LG Tel: 0845 127 0060 Fax: 0845 127 0061 Text: 0845 127 0062 Email: info@sense.org.uk Website: www.sense.org.uk Registered charity no: 289868 November 2011 Introduction Sense With over 50 years of experience, Sense is the national charity working with, and campaigning for, children and adults who are deafblind. Sense provides advice, support, information and services for deafblind people, their families and professionals. Deafblindness Deafblindness is a combination of both sight and hearing difficulties. The complex impact of dual sensory loss means that it is a unique disability. Deafblind people need support with communication, access to information and mobility. Based on independent research, there are an estimated 365,000 deafblind people in the UK.1 About the testing As part of the reform of Disability Living Allowance (DLA), the Government made a commitment to better recognise the needs of people with sensory impairments in the assessment for Personal Independence Payment (PIP).2 The needs of deafblind people are very specific and different from those with a single sensory impairment. Most deafblind people need support with communication, accessing information and mobility, rather than personal care. Therefore, Sense was keen that deafblind people took part in the testing of the first draft of the PIP criteria to try to ensure that the assessment reflects and meets their needs. In total, 18 deafblind people volunteered to take part in the test. The participants represented a broad spectrum of deafblind people. They also had different communication needs. Some required communication support for the assessment, whereas others could participate without any assistance from a third party. Out of the participants put forward by Sense, ten were contacted and nine were assessed by G4S. It is noteworthy that this process was only a trial run, which was heavily supported by the DWP and other organisations like Sense. This means the process is not indicative of what could happen once PIP is introduced. Ahead of the trial, G4S were informed by Sense of the communication support and accessibility needs of the participants. Sense also offered emotional support to deafblind participants and the opportunity for the participants to feedback their experiences. It should be recognised that when PIP is rolled out, organisations like Sense will not have the capacity to offer such intense support to all DLA/PIP claimants. As will be outlined in the report, participants experienced different levels of stress and anxiety during the testing. Once PIP migration is happening for real, we expect these levels to be higher; this underscores the need to implement our recommendations. Findings from the testing: accessibility Difficulty accessing information and communication are two of the key barriers faced by deafblind people. The accessibility needs of deafblind people can vary greatly. Written information should be provided in formats such as large print, braille, audio or electronic formats. Communication methods include clear speech, sign language, hands-on sign, deafblind manual and individually tailored communication methods using different combinations of speech, sign, images and touch. These needs must be taken into account so that individuals can remain in control of their own assessment and be able to communicate clearly and meaningfully about the impact of deafblindness. Provision of information Participants told us that information, such as the welcome pack and feedback form, was provided in inaccessible formats, despite G4S having the communication preferences of the participants beforehand and clear legal obligation under the reasonable adjustment duty within the Equality Act 2010. Information provided in an inaccessible format One participant can only directly access information in audio format. When G4S made the initial contact and offered to send out a welcome pack, they were unaware of his needs. Initially, G4S explained that they could only send out information in Braille or large print, but the participant passed on contact details of the RNIB and explained that G4S had an obligation to organise the transcription of the information in an audio format. Several participants received the welcome pack one day before the assessment. This did not always allow enough time to read the information before the assessment. Where the welcome pack was not sent out in an accessible format, individuals had very little time to ask for support from another person to read it. Administration of the process There were problems with administrative processes, which increased anxiety among participants. The importance of maintaining high standards in this area should not be underestimated and the problems identified should be addressed to ensure a smooth-running operation once the process is implemented. Some participants commented that the length of notice before appointments was too short to access information and to allow time to book communication support or interpreters even where G4S was responsible for this. Overlooking an individual’s preferred method of communication One participant had stated his preferred method of contact was email, but the initial contact was made by telephone. He struggled to hear the person over the phone, found the conversation confusing and so it took a very long time to arrange the assessment. Poor communication with a participant One participant was left a message on his answering machine by G4S, which included a telephone number to call back. He returned the call, but each time he tried, the phone just continually rang without being answered. The participant felt frustrated that he was unable to speak to somebody. Booking communication support People’s experiences around communication support were mixed. Some participants did receive their initial contact from G4S via their preferred method, but in each case, there was no mention of booking interpreters and some participants felt it was necessary to book their own interpreters as a back up, in case the incorrect type of interpreter, or even no interpreter, came to the assessment. In one of the examples given below, the participant never had the assessment as G4S alleged they were unable to find the correct communication support. Once PIP has been fully implemented, it would be of great concern if appointments were cancelled for the reason that no interpreter could be found. It is also unclear what the impact would be on a deafblind person’s real benefit entitlements (for a new or existing claim) if such a situation arose. Booking the right communication support One participant required a British Sign Language interpreter. G4S booked the right interpreter and paid for this without any problems. G4S seemed to follow the right process in order to minimise any stress for the individual as well as meeting their legal requirements to provide an accessible service. Failure to book the right communication support Another participant uses deafblind manual to communicate. G4S contacted her by email with a selection of possible dates for her assessment. She responded with her preferences, but did not hear back. She wrote back to G4S to follow this up, but again she received no reply. Following her third email to G4S, she received a response saying: “I have investigated the interpreter required and it’s going to be impossible to arrange this.” The participant contacted six local interpreters to check if they had been approached by G4S, but none of them had. Accessibility during the assessment In general, the deafblind individuals who took part in the trial assessment felt that the assessors understood their communication needs once they had been explained to them. For example, one assessor understood the needs of somebody with Usher syndrome and ensured she always turned to speak to the individual, rather than his interpreter, and that the room was well-lit. Some participants were accompanied by family members, friends or professionals who support them. We welcome this involvement and the Government’s commitment to individuals being able to decide who they would like to be with them during the assessment when PIP is implemented. For some participants, this included others supporting communication between the assessor and the deafblind person. During the testing this was a mutually agreed decision, but it is essential that the assessment agency puts communication support in place, at no cost to individuals, to both facilitate a meaningful assessment and discharge their legal obligations, rather than expecting family members, friends or others to automatically provide this support. It will be important to take a proactive approach to ensuring individuals’ communication needs are met. As one deafblind man said: “The person that came was very unclear and I struggled to hear what she was saying, but luckily my friend offered to stay and help with communication! But I would have liked to do this independently.” Use of complex jargon One participant, a teenager, found the experience stressful, especially as she did not understand the complex vocabulary. She was supported by her mother, who was able to explain and clarify questions, yet by herself she felt she might have answered questions incorrectly. The examples above show that it is imperative that assessors check that individuals have clearly understood the question and clarify as necessary. In addition, one participant commented that he was not able to read the name badge of the assessor and this could have been a security issue if the assessment had taken place in his own home. Findings from the testing: the face-to-face assessment The barriers faced by deafblind people in their daily living Evidence would suggest that the assessment criteria did not enable assessors to cover the barriers faced by deafblind people in their daily living.3 One assessor even pointed out that the form was not asking the right questions. The mother of this particular participant commented: “In the end her paper was covered in writing, not on the form as there was no place to comment on the points we were making.” Moreover, some participants felt that there was an emphasis on physical impairments and there were few opportunities to talk about sensory loss. It is imperative that assessors are given robust and clearly defined criteria which take account of a wide range of impairments including sensory and multi-sensory loss. Deafblindness is highly complex and impacts on individuals very differently; a uniform approach to assessment criteria which limits the ability to demonstrate and quantify the impact of sensory impairments will result in negative and potentially devastating outcomes for deafblind people. A flexible approach to assessing needs One participant is profoundly deaf, has severe visual impairments and learning disabilities. His mother supported him during the assessment. The assessor made a good effort to understand deafblindness. He did not follow the form, but instead asked him and his mother to talk about a typical day. The assessor listened carefully to the story and then ensured the relevant information was reflected in the correct parts of the form. Through the story telling, the assessor was able to grasp that while the participant is able to make breakfast, he is unable to go shopping and buy food if something runs out. Inappropriate focus on physical impairment One participant was asked to lift his arms as high as he could and grip the assessor’s hand as hard as possible. Both tasks he completed with relative ease, but they are not an indication of the difficulties deafblind people face in relation to mobility and communication. Inappropriate focus on personal care needs “I was asked questions about bathing and getting to the toilet. These are silly questions as I don’t have a problem with either of these. But there were no opportunities to answer questions on social interaction, so I tried to talk about these issues wherever I could, but there were not many chances to do so.” Assessors’ understanding of the barriers faced by deafblind people From the evidence collected from our participants, it is clear that there were inconsistencies in the assessors’ knowledge of the barriers faced by deafblind people. It is apparent that where the assessors had an understanding, they were less likely to follow the form rigidly and provided more opportunities for the deafblind individuals and their representatives to talk about the specific barriers they face. We welcome this more person-centred approach to assessment. One assessor carried out a basic eye test on one participant who has Usher syndrome. This demonstrated how little peripheral vision the participant has. Another assessor checked how well another participant with Usher syndrome read by showing her bold text from some literature. These basic tests of functional impact might be useful in some circumstances, but should not be considered indicative of the overall impact of an individual’s dual sensory loss. When assessments are carried out by a person without knowledge of deafblindness, they could give a false impression of its impact. A more complete picture of the functional impact of deafblindness across individuals’ everyday lives would undoubtedly be provided by a social care assessment carried out by a specialist in deafblindness. It is therefore essential that such documents play a fundamental part in the PIP assessment. In illustration of the risks of too simplistic an approach, the following example shows how an assessor assumed that the functional impact of sight loss would be worse for a person with severe visual impairments than for somebody with less severe vision loss. This is a very salient issue for deafblind people for whom a combination of two more moderate sensory impairments can have a profound impact on their everyday lives due to their multiplying impact. Inappropriate assumptions about the impact of sight loss for deafblind people “The man made brief comments about the others he assessed (without mentioning their names), which included one person with Usher [syndrome] and he had far worse sight than me. I explained to him about varying degrees of visual impairment – we all do not have the same vision problems, however, we are all in the same boat when it comes to coping with Usher and deafblindness on a daily basis.” Assessors must also take into consideration the impact of dual sensory loss on the individual. A combination of visual and hearing impairments will multiply the difficulties an individual faces; however, there is no standard formula to work out the functional impact of combined hearing and sight loss on an individual. In addition, some deafblind people may have additional learning or physical disabilities, which also need to be taken into consideration. It is apparent that not all assessors had an awareness of the barriers faced by deafblind people. On occasions this caused participants to become stressed or upset by the assessment. This could mean that they were not able to answer questions as well as they should have. This demonstrates the importance of the inclusion of written information from individuals, their advocates and other professionals in ensuring that the PIP assessment is accurate. A lack of deafblind awareness leading to inaccessible assessment techniques One participant described the difficulties he had with the physical test. As the assessor had no awareness of deafblindness, she tried to demonstrate the exercises for him to copy, but he was unable to see what the assessor was doing. This caused him to feel stressed and exhausted by the process. It also demonstrates the impact that a lack of awareness can have on an individual in an already stressful situation. An additional comment to come out of the assessment process was that the assessors did not read back what they had written on the form. This meant that the participants did not have any opportunity to check the assessors had understood the barriers faced by deafblind people and to make alterations if anything was incorrect or required clarification or qualification. Personal Independence Payment & deafblind people: key findings & recommendations Deafblind people’s experiences of the testing of the first draft of PIP criteria were highly varied and indicated some key areas of learning that should be acted upon to ensure deafblind people are not disadvantaged when PIP is implemented. 1. Variable understanding of the impact of deafblindness among assessors The results of this testing process show that there are multiple issues that need to be addressed so that the PIP assessment is accurate for deafblind people. It would appear that the experiences of the participants depended on the knowledge and awareness of the staff with whom they had contact. Where assessors and other G4S staff showed some deafblind awareness, or a willingness to learn about deafblindness, participants had a more positive experience of the process. Nevertheless, there are examples in this report of unacceptable practices. Recommendations: * Ensure the PIP application form and assessment process for assessors covers mobility and communication needs, not just physical and personal care needs; * Provide training materials for assessors including specific information on the functional impact of deafblindness and provide deafblind awareness training to all assessors; * Ensure assessors understand that any basic tests on the functional impact of sensory impairments are not extrapolated as being indicative of the impact of deafblindness; * Ensure that written evidence from social care assessments carried out by specialists in deafblindness are given a fundamental role in the PIP assessment; * Avoid unnecessary face-to-face assessments where sufficient written evidence is submitted or where it is clear a face-to-face assessment would be inappropriate. 2. Inaccessible processes and practice Individuals’ experiences during the testing demonstrate a lack of consistent recognition of the access needs of deafblind people and a failure to take account of clearly expressed access requirements. Assessment processes inevitably bring varying levels of stress for deafblind people, given the barriers they face around communication and accessing information. Every reasonable effort must be made to meet these needs to minimise stress and ensure the Department and the assessment agency adhere to relevant legal duties. Recommendations: * Ascertain the communication and access needs of individuals from the start of a claim and meet these preferences when in contact with individuals; * Allow sufficient time to book the correct communication support and between the booking of the face-to-face appointment and the date it occurs so that individuals can read relevant information; * Ensure any appropriate communication or comfort breaks are offered; * Recognise that a family member, carer or support worker may be present in an advocacy role, but do not pressurise them to provide communication support; * Include references to the full range of access requirements of deafblind people in the training materials and procedures related to accessibility. 1 Robertson, J., and Emerson, E., Centre for Disability Research, 2010, Estimating the Number of People with Co-occurring Vision and Hearing Impairments in the UK 2 Maria Miller MP, Public Bill Committee debate on the Welfare Reform Bill, Seventeenth Sitting, 10th May 2011, 776 3 Assessors were using the first draft of the PIP criteria published in May 2011