Analysis of written responses to the consultation on social security in Scotland

6. Disability Benefits

Options for devolved disability benefits - DLA, PIP and AA

6.1 The Scottish Government set out its proposals for DLA, PIP and AA in Part 2 of the consultation document.

Question - What is right with Disability Living Allowance ( DLA)? What is wrong with DLA?

6.2 220 respondents provided comments on both the positive and negative aspects of DLA (128 individuals and 92 organisations).

Positive Aspects of DLA

6.3 Overall, the most commonly mentioned themes were:

• promotes independence and choice;
• holistic, fair and flexible assessment process;
• non-means tested benefit; and
• automatic / lifetime awards.

Promotes independence and choice

6.4 A large number of respondents, mainly individuals and organisations with interests in disability and long term conditions, local authority respondents and housing associations commented on the positive impact of DLA on the quality of people's lives, enabling them to work and to continue to live independent lives. For some individuals, DLA was seen as a lifeline that helped people to lead normal lives.

"So it does pay for independence. And also gives control over your own affairs. It levels the playing field and puts you on the same level as your friends and family."
Royal National Institute of Blind People ( RNIB) Scotland

" DLA has helped me stay in employment, purchase various aids and have a life that would have otherwise been difficult to achieve. I have nothing negative to say."
Individual

" DLA seeks to facilitate participation in society by compensating for the barriers often experienced by people with disabilities and providing additional support to overcome them."
ENABLE Scotland

Holistic, fair and flexible assessment process

6.5 A large number of respondents felt that the assessment process was holistic, fair and flexible enough to take account of a wide spectrum of conditions and illnesses - whether severe or moderate, whether people were in or out of work - and also looked at the impact of this on people's everyday lives. In particular, Children in Scotland and a few individuals commented that sometimes parents can wait a long time for a formal diagnosis of their child's condition, especially for conditions on the autism spectrum, and therefore welcomed the fact that a formal diagnosis was not required to access DLA.

"…we are positive about the fact that DLA can be applied for and awarded even when a child does not have a diagnosis - it is sufficient that their need for extra care or supervision is caused by a physical or mental condition, even if that condition has not yet been formally diagnosed."
Children in Scotland

6.6 In addition, some respondents, mainly individuals, were positive about the fact that the assessment process did not rely on a face to face assessment, and focused largely on the application form and supporting evidence provided by health professionals.

"… this was an easy process as it did not involve face to face assessment and decisions were based on comprehensive written submissions."
Individual

Non-means tested benefit

6.7 Many respondents highlighted the fact that DLA was a non-means tested, universal benefit based on need that was not taxable and did not affect other benefits. A few also noted that DLA could also act as a passport benefit to other means tested benefits e.g. Housing Benefit.

" DLA is non-means tested and must remain so as it enables people to seek employment and equality (extra costs for having a disability can be immense)."
Individual

6.8 A few respondents also made the point that DLA was a well-established benefit that was well understood, and that over time a body of supporting case law and legislation had been built up around it.

Automatic lifetime awards

6.9 Some respondents, mainly individuals and organisations with an interest in disability and long term conditions, commented positively on the fact that it was possible to get automatic or lifetime awards for certain long term conditions or illnesses. Some felt this helped to remove stress and anxiety from the application and assessment process for some people.

"As someone who was assessed as eligible for a lifetime award and who has been lucky enough to have it for many years I can honestly say its transformed my life!!"
Individual

Negative aspects of DLA

6.10 Overall, the most commonly mentioned themes were:

• complex application process;
• too much focus on physical disability;
• eligibility criteria unfair and restrictive; and
• assessment does not look at impact on daily life.

Complex application process

6.11 Many respondents, mainly individuals and housing and homelessness organisations, commented that the application form was complex and difficult to complete without support. Some felt that certain questions about medical problems were intrusive and blunt.

"The application process is long, complex and wholly negative, carers and family members completing these forms speak of the impact upon their well-being, describing one's child through a negative lens feels dishonourable and disloyal."
Glasgow Council for the Voluntary Sector

"Forms are very difficult to use or understand. The questions seem designed to repeat themselves and also to trip up the claimant.
Individual

6.12 Others expressed concern that some of the terminology and 'descriptors' used in the forms were outdated and had a negative focus. A few individuals also said that the application process was humiliating and insensitive.

Eligibility criteria unfair and restrictive

6.13 Some respondents commented that the assessment process focused too much on 'physical disability', and as a result did not adequately take account of other conditions or illnesses such as mental health, autism spectrum disorder, post-traumatic stress disorder, people suffering from domestic abuse, cancer and other relapsing and remitting conditions and illnesses.

6.14 In addition, some respondents felt that the eligibility criteria were sometimes unclear, unfair, and in some cases restrictive. Respondents gave a number of examples of where they felt this was the case:

• age limits exclude certain groups e.g. infants, children over 16, and people over 64;
• assessing entitlement based on day / night time needs was felt to be unfair;
• 'higher rate' mobility component was seen as hard to get for individuals with cognitive impairment or learning disabilities;
• rates for mobility component not taking account of rural and remote locations; and
• lack of consistency in how 'care' and 'mobility' component awards are made for people with similar needs.

"The higher rate mobility route for the severely mentally impaired child is very difficult for claimants to understand. The law around entitlement is so complex that many mentally impaired children are refused. This needs to be looked at again."
Gordon Rural Action

"Disability Living Allowance is highly discriminatory on the grounds of age, as people have to be under 65 when they acquire their mental health condition (or other disability) to have an entitlement. As this benefit exists to enable people to overcome barriers of participation due to society not being designed to meet disability needs, the implication is that people aged over 65 can legitimately be excluded from society."
Age in Mind

6.15 Finally, a few respondents also pointed out that people were not always aware that they might be entitled to claim DLA as the eligibility criteria were often perceived as ambiguous.

Assessment process stressful and undignified

6.16 Some respondents, mainly individuals, highlighted that the assessment process was very stressful and undignified, and left them feeling anxious that they might lose their benefit or not succeed with their application. Some also commented that the timescales between being assessed and getting notification of an award were too long, and that communication was often poor.

6.17 Some respondents, mainly individuals and organisations with an interest in disability and long term conditions, felt strongly that people with certain lifelong and life-limiting conditions and illnesses should not have to be re-assessed, as this was unnecessary and too stressful for the individual concerned, as well as being costly to administer.

"I received DLA indefinitely and in the last few years have been living in a threatening environment frightened that my DLA would be taken away. My health is worse not improved and in cases like mine, the situation should continue and not have to go through assessment after assessment. It is cruel, and because I suffer from a rare condition, those who would examine me, have no knowledge of my condition."
Individual

6.18 A few respondents, mainly individuals, felt that medical assessments should only be undertaken by suitably qualified health professionals, and not by private companies who were considered to be motivated by profit.

Assessment process does not look at impact on daily life

6.19 Some respondents expressed concern that the assessment process focused too much on 'care' and 'mobility' needs and 'bodily functions', and as a result did not take account of the wider impact of a particular condition or illness on an individual's daily life. Respondents suggested that there should be greater flexibility in the assessment process to cover the cost of things that were seen to be essential for people to live independently, with dignity and respect, for example:

• personal laundry;
• clothes;
• cleaning;
• energy costs;
• transport costs, including taxis; and
• specialist therapies.

"No account is taken of the claimant's actual living situation, for example, if they are socially isolated or have no accessible transport. Help not directly linked to 'bodily functions' that may be required to maintain dignity, such as laundry or housework, is not taken into account."
West Lothian Council

Question - What is right with Personal Independence Payment ( PIP)? What is wrong with PIP?

6.20 240 respondents provided comments on both the positive and negative aspects of PIP (133 individuals and 107 organisations).

Positive Aspects of PIP

6.21 Overall the most commonly mentioned themes were:

• holistic approach to assessment;
• non-means tested benefit; and
• special provisions for certain groups.

Holistic approach to assessment

6.22 Many, mainly local authority respondents and individuals, welcomed the holistic and positive approach to the PIP assessment process, feeling that this was more able to take account of the impact of a wide range of conditions or illnesses (including mental health) on a person's day to day life. This was seen to be an improvement on the assessment process for DLA, which tended to focus on what a person could or couldn't do.

"It is based on how a health condition affects the claimant's life."
Cyrenians

6.23 A few respondents also felt that the PIP application process worked well and the claim form was easier to complete. Some highlighted that the new points based system was clearer in terms of eligibility.

"Some disabled people and advice workers found the new points based entitlement criteria easier to use to gain entitlement."
Inclusion Scotland

Non-means tested benefit

6.24 Some, mainly local authority respondents and organisations with an interest in disabilities and long term conditions, noted that PIP was a universal non-means tested benefit that was not taxable and did not affect other benefits. .

Special provisions for certain groups

6.25 A few respondents welcomed the fact that there was scope within PIP to respond to and deal sensitively with people who had particular illnesses or conditions. For example, claims from people with terminal illnesses could be fast tracked.

" PIP with both its care and mobility components has a hugely positive impact on the quality of life for those in receipt. Terminally ill applicants are dealt with speedily and with compassion."
Individual

Negative Aspects of PIP

6.26 Overall the most commonly mentioned themes were:

• impact of face to face assessments;
• application process complex and demoralising;
• eligibility process limiting and discriminatory;
• assessment process stressful and lacks transparency; and
• impact of transition from DLA to PIP.

Impact of face to face assessments

6.27 A large number of respondents, mainly individuals, local authority respondents and advice and support organisations, expressed concern at the impact on claimants of face to face assessments and regular re-assessments. Respondents described the assessment process as being stressful, undignified and demoralising, often leaving people feeling anxious and in a constant state of fear that they might lose their benefit entitlement.

"All groups reported the detrimental effect the process has on their mental health - both in the short and long terms. Participants reported feeling ill before their assessments and very distressed after assessments."
SAMH

6.28 Others stated that the assessment process was not suited to people with illnesses or fluctuating conditions that might seem 'hidden', such as mental health, autism spectrum disorder, HIV and fibromyalgia.

6.29 Some respondents highlighted the negative attitudes of staff at assessments as being a source of anxiety and stress. Some said that during assessments, they felt under suspicion and that assessors were constantly trying to catch them out with what they felt were intrusive questions.

"Although I'm aware I did not have the worst of experiences it was stressful, demeaning and I found it very hard to convey the breadth of how my disability has affected my life since diagnosis 5 years ago. I felt as if I had to watch for questions to 'catch me out', and this affected how confident I felt in answering questions."
Individual

"Evidence has shown that many people with mental health conditions have been put off claiming PIP due to the "attitude" of the adviser taking the call. Staff have been described as abrupt, rude, uninterested and uninformed."
AdvoCard

6.30 Others questioned the expertise of some assessors, and whether they were qualified to make judgements and decisions in relation to certain conditions or illnesses. In some cases, respondents said that medical evidence that they had provided from GPs and other health professionals or experts (which sometimes had to be paid for) was sometimes ignored by assessors.

"The face to face assessments are a sham, unfair and carried out by inexperienced medical professionals with no background or understanding of the disability involved. There is no compassion in the system, claimants are considered guilty and feel on trial leading to worsening mental and physical health."
Individual

"Assessment is not always by doctors and may be completed by other 'health professionals' such as physiotherapists or nurses who may be working out with their expertise."
Midlothian Community Planning Partnership / Midlothian Council

6.31 A few respondents also commented on the fact that very few assessments were carried out in the home and therefore people, regardless of their condition or illness, were expected to attend assessment centres. The centres could sometimes be far away from where people lived, and for some this could be logistically challenging, as well as expensive.

"The assessment is lengthy and often entails having to attend at an examination centre some distance away (up to 90 minutes travel) which is simply too much for some claimants, and for others who make it despite a struggle the fact they have been able to attend is used to justify refusal."
Rights Advice Scotland

Application process complex and demoralising

6.32 A large number of respondents, mainly individuals, said that the application process was overly complex and overwhelming. Some said that it had had a detrimental impact on their health and wellbeing.

"It is appreciated that there needs to be a standard application process but the current PIP application form is confusing, open to interpretation and in most cases needs expert support or guidance to complete."
Individual

"Long and difficult forms to fill out. Some questions very ambiguous. Claimants are given a time limit to fill in form and return, but then have to wait for an unspecified length of time worrying about result."
Individual

6.33 Some of these respondents were also critical of the two stage application process for applying for PIP that involved an initial telephone conversation with the Department for Work and Pensions ( DWP), followed by the requirement to complete a complex 35 page application form, within a very short timescale.

"From the very outset, deaf young people are denied full access to the claim process because they are expected to use the telephone to request an application form."
National Deaf Children's Society

Eligibility criteria restrictive and discriminatory

6.34 A large number of respondents, mainly individuals, local authority respondents and organisations with interests in disability and long term conditions, felt that the eligibility criteria for PIP were too rigid and restrictive. There was also concern that there was too much focus on 'physical functionality', and that the 'descriptors' used to determine eligibility were often not relevant to, or did not recognise, a wide range of complex conditions and illnesses, particularly fluctuating conditions like mental health.

" PIP takes little cognisance of the needs of people with learning disabilities, developmental disorders e.g. Asperger's and autism and those experiencing mental ill-health. We would advocate for a process which acknowledges the spectrum of ill-health and disability."
Glasgow Council for the Voluntary Sector

6.35 In addition, some of these respondents were of the view that the eligibility criteria were difficult to understand and confusing. As a result, it was felt that the criteria were therefore open to interpretation, both by those completing the forms, and also those who were assessing the forms.

6.36 There was also a feeling amongst some respondents that the eligibility criteria for PIP discriminated against certain groups, for example, people over 65 and refugees and asylum seekers.

Assessment process stressful and lacks transparency

6.37 A large number of respondents, mainly individuals and organisations with an interest in disability and long term conditions, expressed concern that the assessment process was very stressful and humiliating, often resulting in severe distress, anxiety and loss of dignity for some claimants. Others commented that the assessment process was overly reliant on a rigid and mechanical points based system that was not capable of taking account of the impact of conditions and illnesses on people's lives.

"The assessment process appears crudely applied, with face to face assessment being too susceptible to 'expected outcomes' (targets) of those carrying out the assessment."
Rights Advice Scotland

6.38 In particular, respondents highlighted that automatic reviews had also created additional stress and anxiety, especially in cases where people had long term illnesses or conditions. Some of these called for automatic or lifetime awards for people with lifetime illnesses or degenerative conditions.

6.39 Many respondents noted that the decision making timescales between application, assessment and confirmation of award were too long, and often meant that claimants were faced with financial uncertainty for long periods of time.

"At the outset, lengthy delays of up to 15 months for a claim to be assessed, leaving people in hardship."
Citizens Advice Scotland

6.40 Some respondents felt that the appeals process was unfair and unclear, and that this also compounded people's anxiety and stress. Others highlighted the fact that the high number of successful appeals demonstrated the poor quality of decision making by assessors.

" DWP decision makers and assessors seem to be trained and instructed to find ways to refuse an application, rather than to help applicants; the system seems to be deliberately designed to 'grind down' applicants, especially so that they are less able or inclined to appeal against an unfavourable decision."
Individual

"It ( PIP) is also bogged down in complaints about people not getting what they are entitled to. I myself had this issue but just accepted the outcome rather than deal with the stress of appealing, as I suffer from mental health problems and any additional stress is something I avoid at all costs."
Individual

Impact of transition from DLA to PIP

6.41 Many respondents, mainly individuals, local authority respondents and organisations with an interest in disability and long term conditions, expressed concern that in their view the eligibility criteria for PIP were more restrictive, and they were aware of many instances of people who had been eligible for DLA, who were no longer eligible for PIP. Respondents provided a range of examples where this had had a detrimental impact on people and their living circumstances, such as, people losing their Motability cars or access to other benefits, and others losing their lifetime awards.

"The fact that the 3 levels of disability grading has been reduced to 2 makes it less fit for purpose, and many people are being downgraded so that they lose mobility cars etc. which they require to live independently. I know of many people who have gone from being quite independent and happy with how they were coping with their disability to being fearful, stuck in their house and unable to pay basic services such as heating due to being downgraded."
Individual

Question - What is right with Attendance Allowance ( AA)? What is wrong with AA?

6.42 172 respondents provided comments on both the positive and negative aspects of PIP (90 individuals and 82 organisations).

Positive Aspects of AA

6.43 Overall the most commonly mentioned themes were:

• holistic approach to assessment;
• application process simple and clear; and
• non-means tested benefit.

Holistic approach to assessment

6.44 Many, mainly individuals and local authority respondents, welcomed the fact that the AA assessment process was flexible and took a holistic view of an individual's needs. It also looked at the impact of the person's condition or illness on their daily life. In particular respondents were positive about the fact that the assessment process also took account of the views of carers, family members and care workers and social workers.

"Allows flexibility and consideration of the 'bigger picture' as to how an illness or a disability affects and the level of attention or supervision required and the social impact this has on the applicant."
East Ayrshire Council

6.45 Some respondents also made the point that AA was a positive benefit as it enabled people to remain in their own homes for longer, since they were able to use their AA to pay for extra care and support.

"It's important to keep people in their own homes and independent for as long as possible. It allows older people to get taxis, ready prepared food, hire a cleaner / gardener / personal assistant for the things they can no longer do."
Individual

Application process simple and clear

6.46 Some, mainly local authority respondents and organisations with an interest in disability and long term conditions, commented that AA was 'fit for purpose' and was simple to apply for. A few respondents highlighted the fact that the application process was largely paper based and did not rely on an intrusive medical assessment.

"The paper-based assessment process means that most applicants with Parkinson's receive the benefit without the stress of a face to face assessment. People are able to apply using either an online form or a hard copy, unlike the rigid hard-copy only approach adopted for PIP."
Parkinson's UK in Scotland

6.47 A few respondents also noted that there were special provisions for people with terminal illnesses or long term conditions, which meant that they automatically qualified for the higher rate allowance, and decisions were often fast tracked.

Non-means tested benefit

6.48 Some, mainly local authority respondents and organisations with an interest in disability and long term conditions, noted that AA was a non-means tested benefit that was not taxable, did not affect other benefits and could also act as a passport to other means tested benefits.

Negative aspects of AA

6.49 Overall the most commonly mentioned themes were:

• lack of mobility component;
• eligibility criteria discriminatory;
• application process complex and intimidating; and
• lack of awareness of entitlement.

Lack of mobility component

6.50 A large number of respondents, mainly individuals and local authority respondents, commented that AA did not have a mobility component, and it was felt that was discriminatory towards people who were over 65. In particular, it was felt that this did not reflect the increase in life expectancy, and was out of kilter with the changes to retirement age.

Eligibility criteria discriminatory

6.51 Many local authority respondents, advice and support organisations and individuals, felt that the eligibility criteria were discriminatory not only in terms of age, but also towards certain groups, such as people with long term or lifelong illnesses or conditions.

"Why should someone becoming disabled at 70 be considered less entitled to a full and active life than they would have been presumed entitled to at 60?"
Aberdeen Action on Disability

"The rules around age ( i.e. pensionable age) do not apply in the disability benefit world and this is an anomaly."
NHS Lanarkshire

6.52 A few respondents also noted that the 'backwards test' in AA was 6 months as opposed to 3 months with other benefits. This was felt to be unfair, and could have an impact on increased poverty levels, and those who were already financially insecure.

Application process complex and intimidating

6.53 Some respondents, mainly individuals and local authority respondents, commented that the application process was too complex and that the forms were too long, inaccessible for some, and daunting to complete.

"It can be extremely intimidating for older people to complete the form, and it is often difficult for carers, family members or friends to help."
Glasgow Council for the Voluntary Sector

Lack of awareness of entitlement

6.54 A few respondents highlighted the fact that many people were unaware that they might be entitled to AA, or that they might also qualify for other benefits, such as Blue Badges or Severe Disability Premium, if they were in receipt of AA. Some of them suggested that AA should be more widely publicised to increase take up.

"I think this benefit should be better publicised so that people with terminal or debilitating conditions can apply for it earlier."
Individual

Question - Is there any particular change that could be made to these disability benefits that would significantly improve equality? Please explain your answer.

Table 6.1 Is there any particular change that could be made to these disability benefits that would significantly improve equality?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	105	91%	11	9%	116
Organisations	49	98%	1	2%	50
All respondents answering	154	93%	12	7%	166

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.55 In total, 166 respondents answered the closed part of this question. Most (93%) of those that responded thought that changes could be made to disability benefits to improve equality. There was overall support from across respondent groups.

6.56 Some respondents chose not to answer the closed question and opted to provide comments and suggestions. Comments and suggestions on changes that could be made to disability benefits to improve equality came from 209 respondents (119 individuals and 90 organisations).

6.57 Overall, the most commonly mentioned themes that emerged from these comments and suggestions were:

• need for a 'whole life' approach to disability benefits;
• mental health should be recognised and given the same priority as physical disabilities and conditions;
• application process should be 'person-centred', simpler and more streamlined;
• assessment process needs to be more positive and holistic;
• less face to face assessments, more reliance on supporting evidence from a range of sources;
• review eligibility criteria, currently too many barriers and unfair; and
• people should have a right to independent advice.

6.58 These themes are explored in more detail across the next four questions.

Question - How should the new Scottish social security system operate in terms of a person applying for a disability related benefit?

6.59 189 respondents provided comments on how the new Scottish social security system might operate when a person applies for a disability related benefit (117 individuals and 72 organisations).

6.60 Overall the most commonly mentioned themes were:

• need for a more flexible and accessible application process;
• simpler and more streamlined application process;
• access to support and advice; and
• right to be treated with dignity and respect.

Need for a more flexible and accessible application process

6.61 A large number of respondents, mainly individuals, local authority respondents and organisations with an interest in disability and long term conditions, called for the application process to be much more flexible, accessible and 'person-centred'. Many suggested that different methods or formats of application should be available, including online, telephone, paper based or 'in person'. This would help to ensure that the application process could be tailored to a person's needs, capabilities and preferences.

"The process of applying for a disability benefit should be as straight-forward and accessible as possible, with the application 'pathway' designed around the needs of the most vulnerable claimants."
Parkhead Citizens Advice Bureau

6.62 The National Deaf Children's Society also suggested that Scotland should lead by example and make available alternative forms of communication such as email, live webchat, text messaging and BSL to ensure the claims process is fully accessible to deaf young people.

6.63 Others made suggestions that applications for disability benefits could be triggered by other services, particularly GPs or hospital consultants. A few respondents also said that it would be beneficial to have a welfare benefits officer based at local GP surgeries who could help people to make claims.

"Application forms for disability benefits should be available in advice agencies, post offices, GP surgeries etc."
Inclusion Scotland

6.64 Some respondents also proposed that there should be much greater clarity in terms of the application process and associated timescales, and that this would help to minimise the anxiety and stress often experienced by applicants. Others suggested that having access to a named advisor would also be beneficial.

"There needs to be clear information on how and when to apply, updates on progress with their application, the option of having a "named person" to receive information on their behalf and enough places to get advice and help."
Learning Disability Alliance Scotland

Simpler and more streamlined application process

6.65 A large number of respondents, mainly individuals and organisations with an interest in long term conditions, called for the application process to be more streamlined, straightforward and simple. As part of this, it was felt by some that the eligibility criteria needed to be clear from the outset and expressed in plain English.

"The system needs to be simple with forms in plain language and not too long."
Bobath Scotland

"The application forms need to be redesigned. Many health conditions do not fit into the application form's criteria."
Individual

6.66 A few respondents also proposed that there should be one application form covering all of the current disability benefits.

Access to support and advice

6.67 Some respondents, mainly individuals, local authority respondents and organisations with an interest in disability and long term conditions, underlined the importance of people getting access to appropriate advice and support to help them to make their claims. Many of these felt that this would help to remove some of the stigma and barriers faced by people when deciding to make claims.

"People should be advised at all stages that they can seek help and assistance from quality advice agencies that are suitably trained to help complete forms. There should be a simple advice line where people can quickly check if they are eligible and also obtain guidance on completing application."
NHS Lanarkshire

"Formal and adequately funded referral pathways should also be established between the Scottish social security agency and independent advice agencies. This would allow for clients who wanted independent advice on welfare rights and / or income maximisation to be put directly in touch with an appropriate agency."
CPAG Scotland

Right to be treated with dignity and respect

6.68 Some respondents underlined the importance of being treated with dignity and respect and that this should be a guiding principle of both the application and assessment processes.

"At the moment the process is humiliating and it seems that they want to avoid paying benefits rather than supporting people with disabilities."
Individual

"We should treat people as customers / clients not claimants. We must remove the perceived stigma that those who have disabilities are some sort of welfare benefit cheats."
Individual

Question - How should the new Scottish social security system operate in terms of the eligibility criteria set for disability related benefits?

6.69 In total, 179 respondents provided comments on how the new Scottish social security system might operate in relation to the eligibility criteria set for disability related benefits (103 individuals and 76 organisations).

6.70 The main themes emerging were:

• transparent, flexible and fair;
• a holistic and balanced approach;
• automatic entitlement for certain conditions; and
• using best practice.

Transparent, flexible and fair

6.71 A large number of respondents, mainly individuals, organisations with an interest in disability and long term conditions and advice and support organisations, said that the eligibility criteria needed to be clear, transparent and easy to understand. Others also felt that the criteria needed to be sufficiently flexible and sensitive to take account of fluctuating conditions, such as, mental health, MS and fibromyalgia.

"We hope eligibility criteria designed by the Scottish Government will consider the implications of hidden symptoms and fluctuation."
MS Society Scotland

"The assessment / consideration questions need to be inclusive for all illnesses and disabilities. At present the questions are not necessarily worded to consider mental health issues."
Dumfries and Galloway Council

"In creating and implementing assessment processes which are specific to Scotland, the often crippling impact of mental health issues on individuals must be given key consideration. It is unfair to suggest that a person's ability to work should be solely based on physical ability."
Scottish Women's Convention

A holistic and balanced approach

6.72 Many respondents, mainly individuals and organisations with an interest in disability and long term conditions, called for a holistic approach to be taken to setting eligibility criteria. Some of these felt that it was important to take a balanced look at how a condition or illness impacted on a person's daily life, taking account of both care and mobility needs.

"The system should help any person with a disability likely to be long term that impacts on their daily life and restricts what they are able to do without help either through aids or other people. There should be different rates to reflect that some people will obviously have more restrictions than others."
Individual

Automatic entitlement for certain conditions

6.73 Some respondents , mainly individuals, suggested that there should be a comprehensive list available of conditions and illnesses that would qualify for automatic entitlement to certain benefits. It was felt that this would be more dignified for people with long term or lifelong conditions, as they would not be required to go through regular assessments and re-assessments.

"We would like the forthcoming Scottish social legislation to include a schedule of conditions that automatically qualify for benefit."
Disability Agenda Scotland ( DAS)

6.74 Related to this, the Scottish Commission for Learning Disability felt that there was a strong argument for looking at the feasibility of granting people with learning disabilities lifetime awards following assessment.

Using best practice

6.75 Some, mainly local authority respondents and individuals, suggested that the eligibility criteria should be informed by best practice from the current DLA, PIP and AA approaches.

"The eligibility criteria should seek to draw on the best of the DLA and PIP criteria and continue to use the impact of an impairment as a proxy for the extra costs of disability."
CPAG Scotland

6.76 In contrast, a few respondents noted that the current points based system used for PIP was not the most appropriate way to assess a person's eligibility to benefits.

"Eligibility should be consistent and fair and based on evidence from professionals who know the claimant or condition well. It should never be a stressful tick box exercise carried out with a barely trained person working for a private contractor."
Scottish Out of School Care Network

Question - How should the new Scottish social security system operate in terms of the assessment / consideration of the application and the person's disability and / or health condition?

6.77 197 respondents provided comments on how the new Scottish social security system might operate in relation to the assessment / consideration of the application and the person's disability and or / health condition (122 individuals and 75 organisations).

6.78 Overall the most commonly mentioned themes were:

• assessments by qualified professionals;
• minimise need for face to face assessments;
• paper based approach that maximises use of existing evidence; and
• automatic entitlement for certain conditions/illnesses.

Assessments by qualified professionals

6.79 A large number of respondents, mainly individuals and organisations with an interest in disability and long term conditions, highlighted the importance of assessments being carried out by qualified health and care professionals, such as, a GP or consultant, community psychiatric nurse or support worker. In addition, some said that it was important that it was someone who knew the individual and had an understanding of the impact of their particular condition or illness on their daily life.

"Any assessments of a person's disability should be done by people who are trained in diagnosing that specific health condition."
Individual

"The medical assessment should be undertaken by someone who knows and understands the condition that the claimant has, and is therefore able to understand how that condition may impact on the daily living of the claimant."
Action for M.E.

6.80 There was also a strong consensus, particularly amongst individuals, that assessments should not be carried out by private companies or individuals who did not have a relevant qualification.

"Assessment must be made by a medical professional, not a private firm that knows nothing about disability, this is ridiculous. A system geared up with money incentives to refuse claimants in many cases is unjustified."
Individual

Minimise need for face to face assessments

6.81 Many respondents, mainly individuals and organisations with an interest in disability and long term conditions, felt that face to face assessments should be the exception rather than the norm, for example, in cases where medical evidence is seen to be inconclusive, or where the individual has actually requested a face to face assessment.

"Face to face assessments should only be used in exceptional circumstances or where claimants choose this approach."
Midlothian Community Planning Partnership / Midlothian Council

6.82 Some also said that if a face to face assessment was required, this should be done in the person's home, or within the local community, to minimise disruption and stress.

6.83 Others suggested that medical assessments should be tailored to an individual's needs, and should also be sensitive to their condition or illness, particularly if this was a fluctuating condition, such as, mental illness, arthritis, or multiple sclerosis.

"The Scottish social security system should look towards ensuring that mental health is given as high a priority as physical disability. Many women in the criminal justice system have mental health issues which can affect their ability to cope with applying for benefits on release from prison."
Scottish Working Group on Women's Offending

"Women said that they found the assessment process extremely stressful, that it was like an interrogation and that the assessors had no understanding of, or training in domestic abuse. Attending assessments had an enormous impact on their health."
Scottish Women's Aid

Paper based approach that maximises existing evidence

6.84 Many respondents, mainly individuals and local authority respondents, were of the view that the assessment process should be paper or electronically based, and should make use of existing medical and other supporting evidence. A few local authority respondents also suggested that more should be done to promote data sharing across public sector bodies and agencies.

Automatic entitlement for certain conditions / illnesses

6.85 Some respondents felt that people with certain long term illnesses or conditions should be granted automatic entitlement or lifetime awards, and should not have to go through stressful assessments or re-assessments.

"People with Motor Neuron Disease and other terminal illnesses should not have to face assessment in order to qualify for benefits. This is a hugely stressful process and it is unbelievable that people facing terminal illness are expected to jump through these hoops."
Individual

Question - How should the new Scottish social security system operate in terms of the provision of entitlements and awards?

6.86 165 respondents provided comments on how the new Scottish social security system might operate in terms of the provision of entitlements and awards (102 individuals and 63 organisations).

6.87 Overall the most commonly mentioned themes were:

• current system of cash benefits work well;
• Motability scheme should be retained;
• wider choice of alternatives to cash benefits; and
• period of awards must be appropriate.

Current system of cash benefits works well

6.88 A large number of respondents, mainly individuals and organisations with an interest in disability and long term conditions, felt that the current system of cash benefits works well. For many, this meant that people were empowered to make their own choices, and were able to live independently.

"Cash would be the best option in our opinion as it provides the client with an appropriate level of choice and independence."
GEMAP Scotland Ltd

6.89 However, a few respondents noted people should not be required to use their disability benefits to pay for services that their NHS or a local authority provider had a statutory duty to provide.

"It is important however, that people are given a genuine choice between receiving this support or the cash equivalent and that attempts are not made to pressurise people into sacrificing part of their benefit for alternative support."
Citizens Advice Scotland

Motability scheme should be retained

6.90 A large number of respondents, mainly individuals, called for the current Motability scheme to be retained. Many said that the scheme was a 'lifeline' that helped to promote their independence, and also enabled them to participate more fully in society.

"As a user of Motability, I can hand on heart say; that it has been a godsend to me. It allows me to be mobile and independent, without it, I would most likely be housebound."
Individual

6.91 A few respondents suggested that it might be appropriate to review the current scheme, particularly in relation to extending the eligibility criteria, but also in terms of broadening what might be available under a new Scottish Motability scheme.

"The Motability system is a lifeline and must be continued. However the eligibility for it is too narrow with PIP and the qualifying distance must be increased from 20 meters to a more realistic distance of 50 to 100 meters to qualify for enhanced mobility and the Motability scheme."
Individual

Wider choice of alternatives to cash benefits

6.92 Some, mainly individuals and local authority respondents, suggested that there should be a wider range of 'non cash' options available to individuals, including:

• cheaper energy tariffs;
• access to a range of aids and home adaptations (such as adjustable beds or wet rooms); and
• access to additional specialist care and support, including respite care.

6.93 However, others noted that it would be important that people were given a genuine choice between receiving this type of 'non cash' support, or the cash equivalent, and that attempts should be made not to pressurise people into sacrificing part of their benefit for alternative support.

Period of awards must be appropriate

6.94 A few respondents highlighted that awards needed to be made for appropriate periods of time to avoid the need for regular re-assessments. It was also suggested that extended or lifetime awards be made for approved long term conditions and illnesses.

Question - How should the new Scottish social security system operate in terms of the review and appeal process, where a person isn't content with the outcome?

6.95 In total, 181 respondents provided comments on how the new Scottish social security system might operate in terms of the review and appeal process (112 individuals and 69 organisations).

6.96 Overall the most commonly mentioned themes were:

• simplify and speed up the appeals process;
• review the need for 'mandatory reconsideration';
• provide access to independent advice and support; and
• clear and accessible information on processes and timescales.

Simplify and speed up the appeals process

6.97 A large number of respondents, mainly individuals and organisations with an interest in disability and long term conditions, called for the appeals process to be fast, straightforward and more transparent, to help minimise the stress and anxiety that appealing a decision can sometimes have on applicants.

"Reviews and appeals are stressful and anxious for the persons at the centre of these and SPAEN would therefore like to see a clear, transparent and easily accessible scheme that provides concise reasoning behind any decisions taken."
SPAEN

"We would want to make sure that the process is clear and accessible from start to finish, and that people claiming devolved benefits understand how and when their claim will be dealt with."
Glasgow Centre for Population Health

6.98 In particular, a few respondents recommended that the Scottish social security system included an internal review process, as a way of reducing the demand on the appeals service.

Review need for 'mandatory reconsideration'

6.99 Some respondents commented on the 'mandatory reconsideration' element of the current review process. Their views were mixed. Some of these respondents stated that this process should be abolished, because it was complex and often resulted in lengthy delays. Others felt that it acted as a barrier to applicants who were challenging decisions.

"Mandatory reconsideration should be abolished as it has led to delays and obstacles in claimants being able to exercise their right to appeal."
Parkhead Citizens Advice Bureau

6.100 In contrast, others felt that 'mandatory reconsideration' was useful, as it avoided the applicant having to go to through a formal tribunal led appeal process.

"There again is the opportunity to speed up this process by introducing a quick and easy reconsideration process and removing the mandatory reconsideration - an appeals process should be simple for people to go through."
NHS Lanarkshire

Provide access to independent advice and support

6.101 Some respondents, mainly individuals, felt that it was important that applicants were given access to independent advice and support throughout the appeals process.

"An independent advocate should be appointed to them to help with the appeals process and advice on what they can appeal on and what they can't."
Individual

Clear and accessible information on processes and timescales

6.102 Some respondents called for clear and accessible information to be made available to applicants, setting out the key stages of the review and appeals process, and highlighting the timescales for decisions and outcomes.

"There are currently timescales for the claimant to abide by, but no guidance on how long it can take for the DWP to respond. This is an imbalance that needs to be addressed."
MND Scotland

Question - Do you think that timescales should be set for applications, assessments and decision-making? Please explain your answer.

Table 6.2 Do you think that timescales should be set for applications, assessments and decision-making?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	130	94%	8	6%	138
Organisations	96	100%	0	0%	96
All respondents answering	226	97%	8	3%	234

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.103 234 respondents answered this question. Almost all of those responding (97%) thought that timescales should be set for applications, assessments and decision-making. All organisations agreed.

6.104 218 respondents (121 individuals and 97 organisations) provided a range of comments and suggestions in relation to whether timescales should be set for applications, assessments and decision making.

6.105 Overall the most commonly mentioned themes were the:

• right to clear and realistic timescales; and
• wider impact of delays in award and entitlement decisions.

Right to clear and realistic timescales

6.106 A large number of respondents, from across a range of respondent groups, felt that there should be clear and realistic timescales set for each stage in the application, assessment and decision making processes. Many felt that this would add transparency to these processes, and also allow individuals to plan accordingly.

"Timescales provide customers with a clear indication of the standard of service to be provided and can be used as a measure of performance."
North Ayrshire Council

6.107 A few, mainly local authority respondents, also suggested that timescales should be set out clearly within the Charter.

"Timescales should be set for both assessments and decision making - surely these would be set out in either / or both legislation and the 'customer charter' if this is adopted."
East Lothian Council

6.108 However, a few respondents stated that there should be some flexibility around timescales for processing applications, for example where more detailed medical evidence was required to support a complex claim.

Wider impact of delays in award and entitlement decisions

6.109 A large number of respondents, mainly individuals, highlighted the impact that the delays in decisions about benefit awards and entitlement could have on personal health and wellbeing. Many respondents stated that this was a great source of stress and anxiety, and in some cases individuals said that it had exacerbated their medical conditions.

"For anyone with poor health, or with mental difficulties, the stress of a long drawn-out process can aggravate their condition, and I feel a clear timescale would help with that."
Individual

"A key concern of the new social security agency must be to reduce the unnecessary stress and anxiety currently being caused by the assessment process."
Scottish Council for Voluntary Service

6.110 Some respondents also highlighted the financial impact of delays in decisions regarding awards and entitlement. Some said that this could leave people in severe financial hardship, particularly if they were relying on a particular benefit award to passport them to other benefits.

"It is important that any woman who is in prison is given ample time to apply for devolved benefits whilst in prison and that the payment is ready for her to claim on the day of release."
Scottish Working Group on Women's Offending

Evidence

6.111 The Scottish Government set out its proposals for evidence in Part 2 of the consultation document.

Question - What evidence and information, if any, should be required to support an application for a Scottish benefit?

6.112 In total, 219 respondents provided comments on the types of evidence and information that should be required to support an application for a Scottish benefit (123 individuals and 96 organisations).

6.113 Respondents made a wide range of suggestions about the types of evidence and information that might be used, including:

• proof of identity, including the applicant's National Insurance number;
• medical evidence from qualified health professionals, for example, GPs or specialist consultants;
• other supporting evidence from people who know the applicant, for example, carers, support workers, housing providers or family members; or
• a personal statement by the applicant, stating how their condition or illnesses impact on their daily life.

"However, it should also be made clear to decision makers that not all claimants will have access to medical evidence and that the absence of it should not automatically weaken the case for awarding a disability benefit. People with M.E. often have difficulty acquiring medical evidence."
Action for M.E.

6.114 A few respondents also commented that the type of evidence and information required would be determined by the type of benefit being applied for and the related eligibility criteria. Some suggested that the individual should be able to determine which information is provided while others suggested that guidance should be provided with the application form about the types of information that could be provided to support an application.

6.115 Finally, a few respondents called for a more joined up approach that placed more emphasis on information sharing between public sector organisations, where applicants have given their consent. It was felt that this would help to save time, speed up the application process and reduce duplication.

"Some people felt that a more joined up system would mean the social security agency seeking out key information, for example, researching individual's medical history and connecting the processes to determine eligibility for other types of support e.g. blue badge, social care, etc."
Health and Social Care Alliance Scotland (The Alliance)

Question - Who should be responsible for requesting this information? Who should be responsible for providing it? Please explain why.

6.116 In total, 199 respondents provided comments on who should be responsible for requesting and providing information to support an application for a Scottish benefit (114 individuals and 85 organisations).

6.117 Overall the most commonly mentioned themes were:

• the new social security agency taking lead responsibility for requesting information;
• applicants having the right to decide who provides information;
• the need for clear guidance on what information or evidence is required; and
• the role of health professionals in providing medical information.

Requesting information - Scottish social security agency

6.118 A large number of respondents, mainly individuals, organisations with an interest in disability and long term conditions and local authority respondents, felt that the new Scottish social security agency, as the key decision maker, should take the lead in requesting information or evidence to support applications.

"The social security agency should collect additional information and evidence from those with a knowledge of the claimant and their circumstance. There should be scope for avoiding a face to face assessment altogether if sufficient written evidence is gathered."
Coalition of Care and Support Providers Scotland ( CCPS)

6.119 A few of these respondents also noted that the process for gathering information and evidence should be as simple and straightforward as possible, to minimise stress and disruption for applicants.

Requesting information - Applicants should have right to decide

6.120 Many respondents, mainly individuals and organisations with an interest in disability and long term conditions, felt that applicants should be able to decide who should provide information and evidence to support their applications.

"We would welcome a system that allows people to choose which route they wish to take. Some people may wish to control the process themselves and others may be happy for the Scottish social security agency to act upon their behalf and thus a provision for allowing access to medical records could be developed."
Glasgow Council for the Voluntary Sector

Requesting information - Need for clear guidance

6.121 Some respondents suggested that there should be clear guidance in the application form about the type of information and evidence that should be provided, whether by applicants themselves, or by health professionals. It was suggested that information requests should be standardised and that a clear template should be used to ensure that the right information and evidence was being gathered.

"ENABLE Scotland suggest that the new Scottish social security system provides an opportunity to redesign the evidence gathering process to ensure that evidence is gathered in the best and most cost effective way."
ENABLE Scotland

Providing information - Health professionals provide medical information

6.122 In relation to providing information, a large number of respondents felt that medical information should be provided by the appropriate health professional, for example, GP, specialist consultant, Community Psychiatric Nurse ( CPN) or Occupational Therapist ( OT). However, some of these respondents noted that in some cases individuals might not have had regular contact with their GP or consultant following diagnosis of a long term condition.

"Ideally the Department officers should obtain this information direct but the lack of personal connection between most patients and their GP means that the doctor is not in a position to give the relevant information so, in practice, the applicant should obtain the information so that they can check and, if necessary, correct it."
Aberdeen Action on Disability

6.123 Some respondents said that applicants should not be charged for evidence or information provided by health professionals. This was seen to be discriminatory and might disadvantage an application. A few suggested that this should be funded by the Scottish social security agency rather than the individual.

6.124 A few respondents also highlighted the fact that some GPs and health professionals were sometimes unwilling to provide evidence or supporting information, as this was time consuming and was having an increasing impact on their workload.

"The claimant should never be stuck in the middle between the social security system requiring the assessment and GPs saying they cannot or will not provide the evidence due to time / resource implications."
Poverty Truth Commission

Providing information - Other supporting information and evidence

6.125 Many respondents felt that the applicant should take the lead in providing relevant personal and other relevant information and evidence to support their application.

"The service user or their representative. This allows the new agency staff to focus more time on cases that require more support and for non-complex claims to be processed quickly."
Fife Council

"The individual claiming is responsible for providing it, where it is reasonable and they should be allowed to have others provide it on their behalf if that would be easier for them due to mental or physical health issues."
Individual

6.126 In addition, some respondents said that the applicant should be responsible for gathering information from others who provide support or care to them, for example, carers, support workers, social workers or family members.

"Other information may only be known by the claimant, his / her carer or a private healthcare provider. In such cases the claimant or appointed person must retain responsibility, but should have clear guidance from the social security agency regarding what is required."
Individual

Question - Should the individual be asked to give their consent to allow access to their personal information, including medical records, in the interest of speeding up the application process and / or reducing the need for appeals due to lack of evidence? If no, please explain why?

Table 6.3 Should the individual be asked to give their consent to allow access to their personal information, including medical records, in the interests of simplifying and speeding up the application process and/or reducing the need for appeals due to lack of evidence?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	128	92%	11	8%	139
Organisations	99	99%	1	1%	100
All respondents answering	227	95%	12	5%	239

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.127 In total, 239 respondents answered the closed part of this question. The majority (95%) of those responding thought that individuals should be asked to give their consent to allow access to their personal information. There was overall support from across respondent groups.

6.128 Further explanation was provided by 101 respondents (52 individuals and 49 organisations).

Informed consent

6.129 Many respondents agreed with the proposal but stated that individuals or their carers would have to formally give their permission or informed consent. It was suggested that this could be part of the application form.

"Scottish Care has made it clear in other areas of our work that information sharing whilst critical to effective care and support can and must be premised on a basis of permission and consent."
Scottish Care

6.130 In addition, some of these respondents sought a number of other safeguards, including:

• the right to withdraw consent at any time;
• respecting privacy and confidentiality;
• access to advocacy and communication support if required;
• no bias to entitlement or award decisions if consent has not been granted; and
• the new Scottish social security system being flexible enough to accommodate the wishes of individuals.

"It is important to ensure that those who do not give consent or cannot give consent freely are protected; current protections seem to be adequate."
Ayr Housing Aid Centre

Reasons for not allowing access to personal information

6.131 The main reason given by those respondents, mainly individuals, who disagreed with this proposal was around confidentiality and data protection. Some of these respondents feared that their personal information might get lost or stolen. Others felt that they should have a say in which health or social care provider should provide evidence to support their application.

Question - If the individual has given their permission, should a Scottish social security agency be able to request information on their behalf? If no, please explain why?

Table 6.4 If the individual has given their permission, should a Scottish social security agency be able to request information on their behalf?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	122	91%	12	9%	134
Organisations	96	97%	3	3%	99
All respondents answering	218	94%	15	6%	233

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.132 In total, 233 respondents answered this question. The majority of respondents (94%) agreed that a Scottish social security agency should be able to request information on behalf of individuals once they have given permission. There was overall support from across respondent groups.

6.133 Further comments and suggestions were provided by 86 respondents (45 individuals and 41 organisations).

Concerns about access to data

6.134 The main reasons given by those respondents, mainly individuals, who felt that the agency should not be able to request information on behalf of individuals were that there should be limits to any consent, and that in the interests of data protection, an individual might be required to grant consent every time information was required. Others suggested that only NHS medical professionals should have access to medical information.

Safeguards

6.135 Some respondents felt that the Scottish social security agency should be able to request information on their behalf, provided a number of safeguards were in place including:

• the new system being governed by fairness, trust and transparency;
• IT systems being secure and data and information being protected and treated confidentially;
• informing individuals who information is being shared with; and
• individuals having the right to control access to their information.

Proposals for eligibility

6.136 The Scottish Government set out its proposals for eligibility in Part 2 of the consultation document.

Question - Do you agree that the impact of a person's impairment or disability is the best way to determine entitlement to the benefits?

Table 6.5 Do you agree that the impact of a person's impairment or disability is the best way to determine entitlement to the benefits?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	112	85%	19	15%	131
Organisations	81	94%	5	6%	86
All respondents answering	193	89%	24	11%	217

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.137 In total, 217 respondents answered this question. Most respondents (89%) agreed that the impact of a person's impairment was the best way to determine eligibility. There was overall support from most respondent groups.

Question - If yes, which aspects of an individual's life should the criteria cover and why?

6.138 There were 185 respondents (103 individuals and 82 organisations) who agreed with the proposal that provided a range of comments.

6.139 Overall, the most commonly mentioned themes were:

• assessing impact of the condition is a fair approach;
• need for a holistic approach that balances flexibility with transparency; and
• eligibility criteria need to reflect a wider range of conditions.

Assessing impact of the condition is a fair approach

6.140 A large number of respondents, from across a range of respondent groups, agreed that the current approach based on assessing the impact of a condition or illness on an individual's daily life was appropriate and fair. It was felt that rather than relying on a 'medical model' of disability, people were assessed on the support needs that were specific to them as individuals, rather than the identified support needs of their specific condition.

"Assessment is based on the impact of a condition rather than on the condition itself. This is one of the positive elements of the current system and should remain."
Contact a Family Scotland

6.141 However, some respondents noted that this approach was not entirely 'perfect', as it did not take account of certain conditions, for example, mental health and other fluctuating conditions. Some felt that in certain cases it could actually penalise individuals who 'managed' their condition well.

6.142 Other respondents underlined the importance of ensuring that any assessment of impact on daily living took account of as wide a range of factors as possible, and made a range of suggestions, including:

• ability to: dress, cook, do housework, shop, walk, communicate;
• additional costs of: heating, laundry, a cleaner; home adaptations; child care, transport; therapies and special dietary requirements; and
• aspects of condition: level of pain, fatigue, breathing problems, cognitive issues, mental health issues.

6.143 A few respondents called for disability benefits to be universal and non-means tested.

Need for a holistic approach that balances flexibility with transparency

6.144 Many respondents, mainly individuals and organisations with an interest disability and long term conditions, suggested that a more holistic view of impact should be taken, perhaps adopting more of a 'whole of life' approach.

6.145 Some respondents suggested that the focus of any approach to eligibility should be on the 'social model' of disability, and based around what a person 'can do' to be independent and participate fully in society, rather than on what they 'can't do'.

"Rather we would argue that a person's life must be assessed in terms of their ability to access all of their rights and live a fully independent life with choice and control."
ENABLE Scotland

"A focus on participating in community life (general sense) should be the main criteria - social versus medical."
Volunteer Scotland

6.146 As part of this some respondents highlighted the importance of having a degree of flexibility in how the impact of conditions and illnesses were assessed, but at the same time ensuring that transparency was maintained.

"The current PIP descriptors and points system should be reviewed to enable the new system to operate more flexibly and be suitable for all disabilities and health conditions, particularly fluctuating conditions."
Citizens Advice Scotland

"This is a difficult area as there is a tension between creating a personalised system and avoiding an overly bureaucratic and complex system. There is likely to be some form of trade-off between accurately assessing the costs faced by a particular individual and developing transparent entitlement criteria that can be applied consistently and timely."
Scottish Council for Voluntary Service

Eligibility criteria need to reflect a wider range of conditions and illnesses

6.147 Many respondents, said that it would be important for the eligibility criteria to take account of a wide range of conditions or illnesses, including mental health, and other fluctuating conditions, and also learning disabilities. Some of these respondents said that the current disability benefits ( DLA, PIP and AA) tended to focus more on physical disability.

Question - If no, how do you suggest entitlement is determined?

6.148 There were 29 respondents (19 individuals and 10 organisations) that provided alternative suggestions as to how entitlement might be determined. Their suggestions included:

• the focus should be on 'capability' not 'disability', otherwise this reinforces the 'medical model' of disability;
• look at how benefits can help to remove barriers, and enable individuals to participate more fully and equally in society;
• more needs to be done to address discrimination and stigma amongst employers; and
• there should be automatic entitlement for certain conditions.

Question - Currently there are only special rules for the terminally ill but should there be others? Please explain why.

6.149 A total of 169 respondents provided comments on whether there should be special rules for a wider range of conditions and illnesses (102 individuals and 67 organisations).

6.150 A large number of respondents felt that special rules should apply to a wider range of conditions and illnesses that were known to be progressive, degenerative and incurable. For example, Parkinson's, MS, and Motor Neurone Disease. It was recognised that this was not straightforward, however, many felt that a new Scottish social security agency could draw up a schedule of eligible conditions and illnesses. This would then allow individuals with these conditions to be 'passported' to relevant benefits, without the need for assessment and continual re-assessment.

"This would remove the humiliation and stress of continuing to reapply, when medical circumstances will not improve."
Edinburgh Tenants Federation

"We think a simple process could be devised for doctors to certify conditions as life-long, life-limiting or degenerative to avoid lengthy and intrusive assessments."
Cyrenians

6.151 However, a few respondents, mainly local authority respondents, voiced caution at developing a definitive list, as this might add complexity to a system that they felt was currently clear and straightforward. Others, including ENABLE Scotland, said that it would be important to ensure that the current rules for people with terminal illnesses were protected and even enhanced.

"The rules for the terminally ill are specific and well understood - to start to add others would lead to an ever increasing list of issues being treated under special rules which could be expensive and ultimately lead to unnecessary delays."
East Lothian Council

Question - How could this be determined?

6.152 There were 125 respondents that provided comments on how this might be determined (75 individuals and 50 organisations).

6.153 A large number of respondents suggested that this could be determined by using medical evidence from a GP or specialist consultant. A few respondents also suggested that there should be some form of consultation or engagement with a range of medical and health professionals, disability groups and third sector organisations involved in the provision of care and support, about developing a comprehensive list of conditions and illnesses that might qualify for automatic entitlement.

"Pre-determined conditions with evidence / certificate provided by GP / Consultant / other healthcare professional confirming diagnosis / prognosis."
Dundee Carers Centre

Question - What do you think are the advantages and disadvantages of automatic entitlement?

6.154 In total, 205 respondents provided comments on the likely advantages and disadvantages of automatic entitlement (115 individuals and 90 organisations).

Advantages

6.155 The main advantages of automatic entitlement identified by respondents included:

• removes anxiety and stress for applicant;

• simplifies and speeds up the assessment process; and
• leads to an increase in uptake / entitlement.

Removes anxiety and stress for applicant

6.156 A large number of respondents highlighted that automatic entitlement would have a positive impact on applicants as it would reduce stress and anxiety, and also remove financial worry and uncertainty. Others said that it would ensure that needs and dignity of vulnerable individuals were respected, at a time when they and their families were already under considerable pressure.

"Automatic entitlement to disability benefits at the higher rate for people with MND would be the best thing that the Scottish Government could do with these new powers to make the lives of people with MND, and their carers better."
MND Scotland

We believe that automatic entitlement for life-long conditions should form part of any social security system based on fairness, dignity and respect."
Cyrenians

Simplifies and speeds up the assessment process

6.157 A large number of respondents also highlighted that automatic entitlement would help to simplify and streamline the assessment process, and could also reduce administration costs, speed up decision making and also ensure more consistent decision making.

"It would remove the need for evidence gathering, improve consistency of decision making, reduce appeals and improve administration and improve speed of processing performance."
North Ayrshire Council

Leads to increase in uptake / entitlement

6.158 A few respondents thought that automatic entitlement might lead to an increase in uptake of benefits, particularly for those who were put off of applying because of the current application and assessment process. In contrast, a few respondents expressed concern that increased uptake might lead to increased pressure on budgets, and this might lead to less money being available to share amongst a greater number of eligible applicants.

Disadvantages

6.159 The main disadvantages of automatic entitlement that were identified by respondents included:

• inability to predict progression of condition;
• using a medical model of disability; and
• impact on fairness and equity.

Inability to predict progression of condition

6.160 Some respondents, mainly individuals and local authority respondents, stated that the progression of some conditions was often difficult to predict - some people might get better, some people might get worse. It was therefore felt that automatic entitlement might not be flexible enough to respond to the changing needs of individuals, and that some people might be disadvantaged as a result. Others suggested that automatic entitlement criteria might need to be reviewed regularly to take account of advancements in medicine and technology.

Using a medical model of disability

6.161 Some respondents expressed concern that focusing on an approved list of conditions and illnesses to grant automatic entitlement, might be too simplistic, as this would not look at the impact of the condition or illness on the individual.

"The disadvantages are that automatic entitlement takes a step back towards the medical model of disability and may unfairly disadvantage claimants by assessing them purely on their condition."
AdvoCard

6.162 A few respondents noted that this might leave the system open to abuse or fraud.

Impact on fairness and equity

6.163 Some respondents, mainly individuals and local authority respondents, highlighted the complexity of drawing up a comprehensive list of eligible conditions and illnesses for automatic entitlement. Some of these respondents questioned the equity and fairness of this type of approach, as access to awards would need be determined by diagnosis of a particular condition or illness. It was felt that this would result in a situation where there would be clear 'winners' and 'losers'. A few respondents highlighted that this would be particularly unfair in cases where it was difficult to get a conclusive diagnosis, or where particular illnesses or conditions were not on the 'list'.

"The main disadvantages are that it could be seen as privileging some conditions over others. It is also problematic in a condition like Parkinson's where it may take some time to reach a confirmed diagnosis because it is difficult to diagnose Parkinson's with certainty and clinicians are monitoring the condition's progression."
Parkinson's UK in Scotland

Question - Would applicants be content for their medical or other publicly-held records, for example prescribing and medicines information or information held by HMRC, to be accessed to support automatic entitlement where a legal basis existed to do this?

6.164 Comments were provided by 184 respondents (115 individuals and 69 organisations).

6.165 A large number of respondents felt that applicants would be content, especially if it would reduce delays and speed up decision making. However, many said that prior consent would need to be given for this, and this would need to be clearly communicated to applicants. Others said that safeguards and clear protocols would also need to be in place to protect information, and to ensure confidentiality.

"Yes as long as data protection is stringent and initial consent has been given by the claimant or, where appropriate, on their behalf."
Rights Advice Scotland

6.166 A few respondents said that people would need to fully informed of who was accessing their information, the type of information being accessed, and the reason for this. However, some said that they were less in favour of a general consent, and would prefer to give specific consent each time information was required.

6.167 The main reason given by respondents (mainly individuals) who did not agree with the proposal, related to unease about providing access to sensitive medical information, without knowing how this was going to be used. Others expressed a lack of trust of agencies and public authorities as another reason, fearing that their information might be used against them.

" HMRC aren't the most trusted agency but I think folk would trust a Scottish social security agency."
Individual

Question - Do you agree that the current UK-wide PIP and AA process for supporting people with terminal illnesses is responsive and appropriate?

Table 6.6 Do you agree that the current UK-wide PIP and AA process for supporting people with terminal illnesses is responsive and appropriate?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	61	62%	38	38%	99
Organisations	39	68%	18	32%	57
All respondents answering	100	64%	56	36%	156

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.168 In total, 156 respondents answered this question. Most respondents (64%) agreed that the current UK-wide PIP and AA process for supporting people with terminal illnesses was responsive and appropriate. However, a substantial minority (36%) disagreed. Disagreement amongst organisations came mainly from a few local authority respondents (although, overall this group agreed) and a few disability and long term conditions organisations.

Question - If yes, should this approach be applied to all disability-related benefits for people with a terminal illness? If no, how could the approach be improved?

6.169 Additional comments were provided by 90 respondents (50 individuals and 40 organisations).

Reasons for answering 'yes'

6.170 Those who agreed felt that it should be an essential part of the new Scottish social security system, and should be used as the model for dealing with all applicants who have automatic awards. These respondents believed the current approach:

• was responsive and appropriate;
• treated people in a compassionate way; and
• enabled claims to be processed quickly.

6.171 In addition, a few respondents highlighted that there might a role for the new Scottish social security agency to raise greater awareness amongst health professionals about benefit support available to people with terminal illnesses, as they were responsible for issuing the DS 1500 certificates.

Reasons for answering 'no'

6.172 Those who disagreed gave a number of reasons for this, including:

• the current definition that death is expected in 6 months is too restrictive and should be reviewed;
• anyone with a terminal illness, regardless of life expectancy, should be granted a DS 1500;
• payments currently take too long;
• the support should be organised by the appropriate health professional, the individual should not have to apply for support themselves; and
• there should be clearer signposting to the types of support available to people who are terminally ill.

Question - Should there be additional flexibility, for example, an upfront lump sum? Please explain your reasons.

Table 6.7 Should there be additional flexibility, for example, an up-front lump sum?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	87	77%	26	23%	113
Organisations	46	88%	6	12%	52
All respondents answering	133	81%	32	19%	165

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.173 In total, 165 respondents answered this question. Most respondents (81%) agreed that there should be additional flexibility, for example, an upfront lump sum. Individuals were slightly more likely than organisations to disagree. There was overall support across all respondent groups.

6.174 Additional comments were provided by 153 respondents on the proposal about whether there should be additional flexibility (93 individuals and 60 organisations).

Reasons for answering 'yes'

6.175 Those who agreed identified a number of reasons for this, including:

• promotes a more sensitive and compassionate approach that helps to improve the quality of a life in the final stages;
• provides individuals with flexibility, control and choice and helps to restore dignity;
• helps to remove hardship and stress at a difficult time; and
• can be used to cover a range of additional costs, for example adaptations and specialist equipment; heating bills; travel and transport costs; additional care costs; family holiday; pay off debts; compensates for lost income; or funeral costs.

"The social security system should be able to act with compassion and understanding towards someone who has a terminal diagnosis, a lump sum might alleviate immediate financial pressures and give a breathing space."
Scottish Out of School Care Network

6.176 Although agreeing with the idea of lump sums, some respondents said that there should be flexibility in the approach and that individuals should be able to choose what suited them best, based on their circumstances. For example, some might prefer to have a part lump sum, and a part regular benefit payment. A few of these respondents also noted that by accepting a lump sum, people should not have to trade off their wider entitlement to disability benefit, especially in cases where people lived longer than expected.

"This would not come without risks however. For instance, an individual may live longer than their original prognosis and be at risk of the lump sum running out. CAS recommends that individuals considering taking a benefit payment as a lump sum be referred for independent advice on their options."
Citizens Advice Scotland

Reasons for answering 'no'

6.177 Those who disagreed presented a number of reasons for this, including:

• the lump sum must be a 'one off payment' that cannot be clawed back at a later point in time;
• payments of large one off sums might be subject to exploitation or fraud;
• some people might find it harder to budget if they get one large lump sum payment, smaller regular payments might be better;
• concern about what would happen if the individual lived longer than expected;
• concern that the payment of a lump sum might impact on other means tested benefits; and
• concern that local authorities would see this as an opportunity to avoid paying for adaptations.

6.178 A few respondents who did not express a view either way suggested that further work was required to identify the overall benefits of one off lump sum payments, and also to clarify eligibility criteria. For example, some questioned whether this would be applicable to all people with a terminal illness, or only those who were eligible for disability benefits.

"The option of upfront payments should be explored if there is a demand for this. There would however have to be clear guidelines on how this works and what happens where survival has exceeded expectation."
East Renfrewshire Council

Whole of life approach

6.179 The Scottish Government set out its proposals for a whole of life approach in Part 2 of the consultation document.

Question - In the longer term, do you think that the Scottish Government should explore the potential for a consistent approach to eligibility across all ages, with interventions to meet specific needs at certain life stages or situations? Please explain why.

Table 6.8 In the longer term, do you think that the Scottish Government should explore the potential for a consistent approach to eligibility across all ages, with interventions to meet specific needs at certain life stages or situations?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	116	94%	7	6%	123
Organisations	74	97%	2	3%	76
All respondents answering	190	95%	9	5%	199

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.180 In total, 199 respondents answered this question. Most respondents (95%) agreed that the Scottish Government should explore a consistent approach to eligibility across all ages. There was overall support from across respondent groups.

6.181 Additional comments were provided by 159 respondents (92 individuals and 67 organisations).

Reasons for answering 'yes'

6.182 Those who agreed identified a number of reasons for this, including:

• provides a fairer, more holistic and person-centred approach, that would remove unnecessary stress at key transition points i.e. from childhood to adulthood, or when people reach 65;
• helps to simplify a complex benefit system by eliminating the need for different levels of benefit at different life stages;
• less bureaucracy and therefore easier, simpler and cheaper to administer; and
• less discriminatory than the current approach, where access to the different disability benefits is determined by age.

"We firmly believe that disabled people should receive the support they need so they can participate fully in their own lives and that of their families, communities and wider society. In order to do this, they need to be able to access social security benefits regardless of their age and stage in life."
Glasgow Disability Alliance

"Would be beneficial to have a whole life approach. For many of our families, transition is a difficult enough time and they have to think about the implications of other benefits such as ESA. Would be good if they had one less thing to worry about."
PAMIS

Reason for answering 'no'

6.183 The main reason presented by those who disagreed with the proposal was that it would be hard to develop and administer standard eligibility criteria for a single disability benefit, as the needs and impact of a health condition or disability may impact differently at different life stages.

Question - What would the advantages and disadvantages of a single, whole-of-life benefit be?

6.184 There were 164 respondents that provided comments on the likely advantages and disadvantages of a single, whole-of-life benefit (97 individuals and 67 organisations).

6.185 The main advantages of a single, whole-of-life benefit that were identified by respondents, included:

• a fairer and simpler approach, with less stress and anxiety for applicants;
• providing certainty and allows people to plan for the future;
• all age groups would have same level of eligibility, with no need to transition at 16 and 65, and no need to reapply; and
• easier and less costly to administer.

"Consistent criteria across the benefits and the life of a person would seem fairer as it can be confusing for people who move from one benefit to another, and the impact this has on the value of entitlements they receive, only because they are a year older."
ENABLE Scotland

"…it would tend to reduce the cliff-edges experienced by disabled people where they suffer stress through the worry that their previous entitlement could be lost through being subjected to a new assessment for a different benefit with completely different qualifying criteria."
Inclusion Scotland

6.186 The main disadvantages of a single, whole-of-life benefit that were identified by respondents, included:

• a potentially more complex application and assessment process, with a range of thresholds;
• eligibility criteria may be difficult to define when amalgamating different benefits;
• possible complications with non-devolved benefits;
• clarity would be required on how to deal with fluctuating conditions or changes in medical conditions; and
• potentially a very expensive benefit to administer.

"To avoid reducing entitlements it would need to be designed to incorporate all existing entitlements from different benefits so may complicate any application and assessment process."
NHS Lanarkshire

"Where someone is affected by a progressive condition not having specific points in their lives where they are reassessed for benefits may mean they do not get the right level of support if their needs are increasing over time."
Midlothian Community Planning Partnership / Midlothian Council

Proposals for assessments

6.187 The Scottish Government set out its proposals for assessments in Part 2 of the consultation document.

Question - Could the current assessment processes for disability benefits be improved? Please explain how?

Table 6.9 Could the current assessment processes for disability benefits be improved?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	125	99%	1	1%	126
Organisations	88	100%	0	0%	88
All respondents answering	213	100%	1	0%	214

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication). Due to rounding, although one respondent actually disagreed, the table shows that overall 100% said 'yes'.

6.188 214 respondents answered this question. All but one individual respondent thought that the current assessment processes for disability benefits could be improved.

6.189 Further comments were provided by 201 respondents (113 individuals and 88 organisations). As almost everyone felt that the assessment processes could be improved, comments mainly came from those who supported improvement of the current processes. These are discussed below.

6.190 Overall the most commonly mentioned themes were:

• a more holistic and simplified approach based on evidence;
• minimise the need for face to face assessments;
• be sensitive to the impact of conditions and illnesses;
• auto entitlement and life time awards for certain conditions; and
• access to advice and support.

A more holistic and simplified approach based on evidence

6.191 A large number of respondents, from across respondent groups, felt that there was a need for a more holistic and simplified approach to assessment that was paper-based, and informed by evidence gathered from medical or social care professionals, similar to the current Attendance Allowance approach.

"Inclusion Scotland believes that the great majority of assessments should be 'paper' assessments which rely on the information provided in the application form plus additional supportive evidence from carers, care and social work staff and health professionals."
Inclusion Scotland

"The Scottish Government should look to the model of social security in Northern Ireland which takes a more holistic view of social security and supports claimants to establish what they are entitled to, rather than a system that creates barriers to claimants securing entitlements."
Scottish Campaign on Welfare Reform

6.192 Some of these respondents also noted that the new Health and Social Care Partnerships should allow a more joined up approach to be adopted across health and social care practitioners. Others highlighted the importance of supporting evidence being provided by people who knew the applicant well, for example, carers, support workers and family members.

"If there was more of a partnership approach to the assessment process between external assessors and local health and social care professionals the assessment process for disability benefits would be less adversarial and would perhaps command more confidence from the wider public. It would also be fairer and more balanced."
Aberdeenshire Council

"In assessing people's eligibility for disability benefits, much greater emphasis should be given to evidence from people who know the claimant, including health and other relevant professionals, carers and family members."
Citizens Advice Scotland

6.193 Some respondents expressed concern that the current application forms were confusing, repetitive, hard to complete and should be simplified. In addition, a few called for a single assessment form that could be used to determine access to a range of benefits.

"We feel the application process needs to be made simpler. The forms are complicated, repetitive and many people feel they are designed to confuse."
Glasgow Disability Alliance

"Any assessments should be co-ordinated so that a single assessment for one benefit provides access to as wide a range of benefits as possible. In particular there should be close links to social work assessments."
Argyll and Bute Council

Minimise the need for face to face assessments

6.194 A large number of respondents, from across respondent groups, felt that the requirement for face to face assessments should be kept to a minimum. For example, where requested by the applicant, or where insufficient supporting evidence had been provided. Some of these pointed to the overreliance of the PIP assessment process on face to face assessments, and the negative impact that this had had on people's health and wellbeing.

"The PIP face to face assessments are not fit for purpose and often the independent professional is underqualified to understand the conditions in their entirety."
Individual

"For people who have learning disabilities a face to face assessment with someone they have never met is unlikely to lead to an accurate picture of their care and mobility needs. For a learning disability, a face to face assessment will generally be based on the claimant's responses and a list of rudimentary cognitive assessments."
ENABLE Scotland

6.195 Respondents felt that medical assessments should be carried out by properly trained and qualified medical professionals, and not by private companies. Others suggested that assessments should be carried out in the person's home, or as close to the person's home as possible, to avoid people having to travel long distances to get to assessment centres.

"In the Dumfries and Galloway area our clients can be sent to Carlisle or Glasgow for an assessment. This is too far when there is an assessment centre in Dumfries."
Citizens Advice Scotland

Approach needs to be sensitive to the impact of conditions and illnesses

6.196 Some respondents, mainly individuals and organisations with an interest in disability and long term conditions, felt that the approach to assessment had to be sensitive to the impact of a condition or illness on an individual. These respondents called for a more person-centred approach that treated people with dignity and respect.

"The current process appears rigid and lacking a meaningful understanding of the fluctuating nature of certain conditions. Also it seems unresponsive to stable or progressively deteriorating conditions, and instead forces everyone in this situation to undertake an assessment and, sometimes, retesting."
Scottish Council for Voluntary Service

"The use of modern IT systems and linkage between Health / Social Care and Scottish social security agency in a planned and a sustainable manner would help implement a person-centred approach and would be both beneficial to applicants and the system itself."
Ayr Housing Aid Centre

Automatic entitlement and lifetime awards for certain conditions

6.197 Some respondents, mainly individuals and poverty organisations, called for people with certain long term conditions and illnesses to be given automatic entitlement, and applicants given access to lifetime awards without the need for continual re-assessment.

"The existing assessment process could be improved by introducing automatic entitlement to disability benefits where it can be established that a person has a long term condition that is unlikely to improve."
Disability Agenda Scotland ( DAS)

Access to advice and support

6.198 Some, mainly local authority respondents, highlighted the need for people to be able to access appropriate advice and support to guide them through the application and assessment process.

"There is little or no information about where to get help to complete forms and many services that once did this have lost funding or have huge waiting lists."
Glasgow Disability Alliance

6.199 A few also suggested that in a new Scottish social security system, local authorities could potentially act as a single point of contact and provide an application and assessment service alongside information, holistic support and benefit delivery to customers.

Question - For those people that may require a face to face assessment, who do you think should deliver the assessments and how?

6.200 In total, 220 respondents (125 individuals and 95 organisations) provided additional comments on who should deliver face to face assessments and how this should be done.

6.201 Respondents provided a range of suggestions on who should deliver these assessments, including:

• suitably trained health professionals with a knowledge of the particular conditions, who are registered with the NHS;
• not-for-profit organisations supported by other health or social care professionals - but not private sector contractors driven by profit;
• the Scottish social security agency could have its own in-house team of medical experts responsible for undertaking assessments; or
• done by the person's own GP or specialist consultant, or co-ordinated through the local Health and Social Care Partnership.

"We believe that assessments should be carried out by a not-for-profit organisation which adopts a person-centred approach and is not incentivised by targets or profits, and which invests in the proper training of its frontline workers."
Cyrenians

6.202 Respondents also provided some suggestions as to how the assessments should be undertaken, including:

• taking place at local and accessible locations, and at times that suit the individual, with the option of a home assessment;
• treating people with dignity and respect;
• providing a supportive approach, sensitively tailored to the individual's needs; and
• allowing individuals to bring a support workers to the assessments.

Question - What are the advantages and disadvantages of different types of assessments e.g. paper based, face to face, telephone?

6.203 Comments on the likely advantages and disadvantages of different types of assessments were provided by 183 respondents (105 individuals and 78 organisations).

Paper based assessments

6.204 The advantages identified were:

• quick and straightforward, minimises stress and reduces administration costs;
• easier for advisors to provide support to applicants with their application forms;
• less intrusive for the applicant, and provides a record and reminder for them; and
• applicants can take their time to complete the application - they can review and refine as they go along.

6.205 The disadvantages identified were:

• not good if applicant does not have sufficient evidence to support their claim;
• forms are too long and complex, and deadlines for returning completed applications are often very short;
• people might not understand or misinterpret questions, and not provide the right information;
• not all applicants are able to explain their conditions in writing; and
• people are not always able to access support and advice to help them complete their applications.

Face to face assessments

6.206 The advantages identified were:

• a more balanced and fair way to assess the impact of a condition or illness on an applicant,
• if the assessment is done at the applicant's home, the assessor can get a better understanding of the individual's needs;
• an opportunity for the applicant to explain their circumstances in more detail; and
• beneficial if the applicant does not have sufficient evidence to support their claim.

6.207 The disadvantages identified were:

• intrusive, intimidating and stressful experience for some applicants - can cause anxiety and distress for applicants, especially if held in an unfamiliar setting;
• difficult for some applicants to get to assessment centres, especially if they are outwith their local community. This can create complex logistical problems that leave the applicant out of pocket;
• only provides a 'snap shot' of a person on one particular day, and not an overview of how a person might be day to day. This is a particular issue for people with fluctuating conditions; and
• sometimes assessors lack sensitivity in the way that they deal with applicants at assessments, sometimes leaving applicants feeling demoralised.

Telephone assessments

6.208 The advantages identified were:

• can happen in the person's home, removes stress and anxiety of having to travel to an assessment centre; and
• efficient, quick and cost effective.

6.209 The disadvantages identified were:

• not possible to observe body language. This can make it difficult for people to understand what is going on;
• not everyone is able to, or likes to use a telephone. This can be a barrier for a wide range of groups, for example, people with hearing impairments; communication impairments; mental health issues; older people, people with memory problems or people who are not able to concentrate;
• people are sometimes reluctant to talk about their condition or illness on the telephone; and
• people might feel intimidated if they are being asked lots of questions by telephone, they might get confused and not answer correctly.

Question - How could the existing assessment process be improved?

6.210 There were 158 respondents that provided comments on how the existing assessment process could be improved (89 individuals and 69 organisations). They provided a range of suggestions, including:

• application form should be simplified, removing the repetitive questions, and timescales for returning applications should be extended;
• more reliance on evidence from people who know the applicant, for example, carers, support workers, family, occupational therapists, or community psychiatric nurses;
• a national approach is required to assessment that ensures consistency in decision making and equal treatment of all applicants;
• assessment process must be person-centred, and flexible enough to take account of their needs and the impact of their condition or illness, especially for those with fluctuating conditions;
• there should be a flexible staged assessment process - from simple desk assessment; followed by telephone interview, if required, to gather more evidence; to a face to face assessment, only if there is lack of appropriate supporting evidence;
• face to face assessments should only be undertaken by suitably qualified health professionals, and definitely not by private companies driven by targets and quotas;
• there should be improved collaboration between external assessors and local health and social care professionals;
• no re-assessments for people with long term conditions or illnesses, instead they should have automatic entitlement and access to lifetime awards;
• staff need to be better trained and supported to ensure that applicants are treated with dignity and respect;
• applicants should have access to local independent advocacy and support; and
• there should be a clear map of all of the key stages in the application, assessment and appeals processes, with associated timescales.

Question - Could technology support the assessment process to promote accessibility, communication and convenience? Please explain why. If yes, please explain what technology would be helpful?

Table 6.10 Could technology support the assessment process to promote accessibility, communication and convenience?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	88	79%	23	21%	111
Organisations	71	97%	2	3%	73
All respondents answering	159	86%	25	14%	184

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.211 In total, 184 respondents answered this question. The majority of respondents (86%) thought that technology could support the assessment process - but individuals were slightly less supportive of this than organisations. There was overall support from across respondent groups.

6.212 Additional comments, mostly relating to how technology might improve the assessment process, were provided by 170 respondents (96 individuals and 74 organisations). These comments were largely made by those who answered 'yes', or didn't answer the closed part of the question.

6.213 Respondents provided a range of suggestions, including:

• make more use of skype and video conferencing, especially in rural and remote rural areas;
• use smart phones, tablets and other devices to overcome barriers faced by some groups, for example, those who may need BSL interpretation;
• need to guard against disadvantaging people who might be digitally excluded, or people who live in remote rural areas where there is a poor broadband connection; and
• technology must not be used as a default position, as is the case for Universal Credit, instead it should be one of a range of options that people can choose from depending on their needs and capabilities.

"For some people in more remote locations with difficulty travelling such technology would be advantageous, assuming they are capable of using it and have a good enough internet connection."
Individual

"Skype or video conferencing could be used to enable the customer in a remote location have a face to face with a decision maker. Would need to be very clear however about the availability / functionality of required technology and the resources required to provide."
Dumfries and Galloway Council

Proposals for awards

6.214 The Scottish Government set out its proposals for awards in Part 2 of the consultation document.

Question - If the individual's condition or circumstances are unlikely to change, should they have to be re-assessed? Please explain why.

Table 6.11 If the individual's condition or circumstances are unlikely to change, should they have to be re-assessed?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	23	17%	112	83%	135
Organisations	11	11%	85	89%	96
All respondents answering	34	15%	197	85%	231

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.215 In total, 231 respondents answered this question. Most respondents (85%) thought that people should not have to be re-assessed where their condition or circumstances were unlikely to change. This view was shared across most respondent groups.

6.216 Further comments were provided by 206 respondents (117 individuals and 89 organisations).

Reasons for disagreeing

6.217 The main comments provided by those who disagreed, included:

• the impact on the individual, as re-assessments can cause unnecessary stress and anxiety, and can also be demeaning and demoralising;
• it would help to reduce administration costs, and free up staff time to focus on other aspects of the disability benefits;
• need for a more flexible approach in the new Scottish social security system, where the onus should be on the individual to report any changes in condition or circumstances - whether a particular situation has improved or deteriorated; and
• indefinite or lifetime awards should be awarded to people whose conditions will not get better, for example, people with learning disabilities or people with progressive conditions like MS, Parkinson's Disease or Motor Neurone Disease.

Why should someone have to go through reassessment every couple of years if their condition won't improve? It's worrying, knowing that you'll have to be reassessed and the next person might change the decision. Being assessed is very stressful."
Individual

"When talking about this, it is important to acknowledge that the issue for people with progressive conditions is not that their situation will not change, but that it will not get better. Parkinson's UK believes that the terminology used should reflect this."
Parkinson's UK in Scotland

Reasons for agreeing

6.218 The main comments provided by those who agreed, included:

• the importance of regularly reviewing whether an individual's condition or circumstances have changed;
• the impact of advances in medicine, treatments and technology need to be considered over time;
• re-assessments should happen over a longer timeframe, between every 5 to 10 years, or whenever requested by the individual, if their condition or circumstances have changed for the worse; and
• the necessity of safeguards to minimise fraud or abuse of the system.

"Some conditions can vary in their severity, some improve over time, and others worsen over time. For long term conditions, a reassessment should be done around every 5 years, if they are conditions in which things can change."
Individual

Question - What evidence do you think would be required to determine that a person's condition is not likely to change? (Or should not be reassessed?)

6.219 In total, 203 respondents (125 individuals and 78 organisations) provided comments on the types of evidence that would be required to determine whether a person's condition was likely to change.

6.220 Overall, respondents agreed that medical evidence, either from a GP or specialist consultant, should be provided to confirm a diagnosis and likely prognosis of any condition or illness. A few also suggested that other supporting evidence could be provided by people who know the applicant, for example, carers, support workers or family members.

Question - Who should provide that evidence?

6.221 Comments on the types of evidence that would be required to determine whether a person's condition was likely to change were provided by 193 respondents (118 individuals and 75 organisations).

6.222 A large number of respondents, from across respondent groups, agreed that medical information should be provided by the appropriate health, social care or allied health professional, for example, GP, specialist consultant, Community Psychiatric Nurse ( CPN) or Occupational Therapist ( OT). However, some of these respondents noted that in some cases individuals might not have had regular contact with their GP or consultant following diagnosis of a long term condition.

"Evidence should be provided by whoever is in the most appropriate position to produce information on diagnosis and prognosis for that particular individual."
MS Society Scotland

6.223 Some respondents, mainly individuals, suggested that the applicant should be responsible for providing the evidence in the first instance, and this could then be verified by the appropriate health or social care professional.

"The person involved should give written permission to approach their medical team so the assessors could then collect the information required."
Individual

6.224 A few respondents, mainly individuals, felt that evidence should also be provided by carers, social care workers or third sector workers, who provide support and care to the person on a daily basis, because they would be in a better position to evidence the impact of the condition or illness on the individual, than a consultant or GP who might only see the person infrequently, if at all.

"Whoever is dealing with this person on a regular basis, whether this is clinical, mental health worker etc."
Individual

"What they should be doing is go to the people who you see on a regular basis and ask for their input."
The Poverty Alliance

Alternatives to cash

6.225 The Scottish Government set out its proposals for alternatives to cash in Part 2 of the consultation document.

Question - Do you think people should be offered the choice of spending some of their benefit for alternative support, such as reduced energy tariffs or adaptations to their homes? Please explain why.

Table 6.12 Do you think people should be offered the choice of spending some of their benefit for alternative support, such as reduced energy tariffs or adaptations to their homes?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	85	69%	38	31%	123
Organisations	46	61%	30	39%	76
All respondents answering	131	66%	68	34%	199

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.226 In total, 199 respondents answered this question. The majority of those responding (66%) thought that people should be offered the choice of spending some of their benefit for alternative support. However, a substantial minority (34%) disagreed. In terms of organisational respondents, disagreement mainly came from some local authority respondents, a few disability and long term conditions organisations, a few housing and homelessness organisations and a few advice and support organisations.

6.227 Additional comments or suggestions were provided by 187 respondents (106 individuals and 81 organisations) on the types of alternative support that benefit could be used to fund. Often the same points were made by those who agreed and those who disagreed.

The importance of choice

6.228 The main reason for answering 'yes' related to the importance of choice and control for individuals. A large number of respondents, who agreed with the proposal, as well as a few who disagreed, felt that this would offer increased choice to individuals and enable them to take control of managing their care and support needs. Although some of these respondents stated that there had to be real choice. Others highlighted the importance of providing clear information of the range of options that might be available, as this was not clear from the consultation paper.

"It is important however, that people are given a genuine choice between receiving this support or the cash equivalent and that attempts are not made to pressurise people into sacrificing part of their benefit for alternative support."
Citizens Advice Scotland

"People should be free to spend their benefit exactly how they choose. It's not a present with strings attached."
Individual

6.229 These respondents also highlighted a number of other issues that would need to be considered in more detail, including:

• preference that goods and services were provided by not-for-profit companies, to avoid vulnerable people being exploited by private companies and unscrupulous marketing companies;

• need for greater clarity on the boundaries between social security support - in the form of cash, and social care support - in the form of services; and
• whether increased choice would lead to increased costs.

Other issues

6.230 Other respondents, who both agreed and disagreed, did not feel that people should be offered a choice, and stated that cash should remain the default position. These respondents felt that this would ensure that people were treated with dignity and respect, and had the freedom to decide how they met the additional costs associated with their disability or illness.

"Should the Government decide to go down this route, then it must be clear that this is a choice for people to opt-in to, with cash remaining as the default. They must also be able to opt out of this at any time."
The Poverty Alliance

6.231 Some respondents who agreed and some who disagreed (mainly local authority respondents) also commented that there was a lack of detail in the consultation paper about what the alternatives to cash might be. A few respondents also expressed concern that increased choice might lead to increased administration costs.

"There is limited commentary available in the document around what types of services this could include, how this would be procured / managed therefore additional information would be required to allow an informed discussion to take place."
COSLA

6.232 Respondents also highlighted a number of other issues, including:

• reduced energy tariffs should be available as a right for all vulnerable people in Scotland, and not as an alternative to disability benefit;
• Scottish Government should take the lead in negotiating cheaper tariffs, independently of the benefits system; and
• concern about how 'in-kind' benefits might affect other passported benefits.

"As an aside, the Scottish Government should tackle fuel poverty so that legislation is passed that those on card / key meters (who are often those with least money) do not have to pay more for fuel than those on ordinary meters."
Edinburgh Tenants Federation

6.233 One area where respondents, who both agreed and disagreed with the proposal, sought clarity on was in relation to adaptations. Many of these respondents felt that this was already funded through local authorities, and that individuals should not be expected to meet these costs from their disability benefits. This might lead to local authorities withdrawing their funding support. It was suggested that a more joined up approach would need to be developed on this between the new Scottish social security agency and local Health and Social Care Partnerships.

Question - What alternative support do you think we should be considering?

6.234 Comments were provided by 106 respondents (68 individuals and 38 organisations) on alternative support that should be considered. These respondents provided a range of suggestions on alternative types of support, these are listed in order of priority below:

• access to a wide range of aids and adaptations for the home (including stair lifts, bath hoists, special beds);

• reduced energy tariffs;
• retention of the Motability scheme, with the possibility of extending this to all people entitled to disability benefits;
• access to a range of travel concessions, for buses, trains and ferries, and also support with transport costs, for example, taxi cards;
• support for food, clothing, home decoration, laundry costs or cost of employing a cleaner;
• subsidised telecommunication packages;
• support to sustain education, training and employment, and rehabilitation support;
• support to run a car if not eligible for the Motability Scheme; and
• support for independent living, including the installation of assistive technology.

Question - Would a one-off, lump sum payment be more appropriate than regular payments in some situations? Please explain why.

Table 6.13 Would a one-off, lump sum payment be more appropriate than regular payments in some situations?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	58	52%	53	48%	111
Organisations	31	58%	22	42%	53
All respondents answering	89	54%	75	46%	164

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.235 In total, 164 respondents answered this question. Views of respondents who answered the closed part of this question were quite evenly split - with just over half (54%) feeling that a one-off lump sum payment would be more appropriate than regular payments in some situations, and just under half (46%) disagreeing. Overall, the main respondent groups reflected this split position.

6.236 Further comments were provided by 138 respondents (81 individuals and 57 organisations).

6.237 Those respondents who agreed with the proposal provided a range of suggestions, including:

• this should only happen in certain situations. Ffor example, where the person is terminally ill, or where a person's condition has changed suddenly and their home needs to be adapted or they need to purchase a suitable vehicle (if they are not eligible for the Motability Scheme);
• people should have choice and the new Scottish social security system should be flexible enough to respond to individual needs;
• any lump sum should be disregarded as capital for other means tested benefits, as many claimants will often be reliant on such benefits; and
• this type of approach would need to be underpinned by clear eligibility criteria.

"Care needs to be taken over the potential effects of a lump sum on other benefits to avoid deprivation of capital rules. The lump sum would be an exact amount for the adaptation. The lump sum would be preferable if any reduction in benefit would cause hardship."
Individual

6.238 Those respondents who disagreed with the proposal also made some suggestions, including:

• where a person is terminally ill, accessing a one-off lump sum, might limit their entitlement to benefit at a later stage, if they live longer than expected;
• that regular payments are better than one-off payments, although there should be an alternative option for some people to have a lump sum payment, in addition to regular payments; and
• that potential for budget mismanagement for people who are not good with money, and it also exposes vulnerable people to exploitation.

"…we would support people diagnosed with a terminal illness being given the option of an up-front lump sum if that is what they choose to do. However, CAS recommends that individuals considering taking a benefit payment as a lump sum be referred for independent advice on their options."
Citizens Advice Scotland

"The money may be spent unwisely or stolen by unscrupulous relatives or 'friends'."
Individual

Question - What would be the advantages and disadvantages of such an approach?

6.239 In total, 105 respondents provided comments on the likely advantages and disadvantages of one-off lump sum payments. Comments were provided by 62 individuals and 43 organisations.

6.240 The main advantages that were identified by respondents in relation to one-off lump sum payments, included:

• lump sum could cover large scale costs that are required quickly, as a result of a sudden change in an individual's condition or circumstances;
• more choice and control given to the individual to decide how they use their money - helps to restore dignity and respect; and
• helps to improve an individual's quality of life immediately.

"This approach provides much greater choice for the individual and would, we believe, signify a much more accessible and responsive system that enables and empowers individuals to make choices. This would be a practical application of the dignity and respect principles on which the system will be founded."
Glasgow Council for the Voluntary Sector

6.241 The main disadvantages that were identified by respondents in relation to one-off lump sum payments, included:

• loss of entitlement, especially where the effects of a condition persist longer than the time covered by the one-off lump sum payment;
• potential loss of regular income, how will on-going expenses be covered;
• less empowering as a form of social security, might be perceived as more like a charity grant scheme;
• people may already struggle to manage their finances, having access to a lump sum payment may make them even more vulnerable to exploitation;
• people may feel coerced into using their lump sum to pay for costs that are currently covered by other organisations, for example, some aids and adaptations currently funded by local authorities; and
• adds another level of assessment to be able to determine eligibility.

"This should be exceptional with conditionality built in as there is risk that people may not use such sums appropriately over a timeframe. One off lump sums may potentially have an impact on eligibility for other UK benefits by exceeding capital limits."
Scottish Borders Council

"The ongoing daily costs in caring for someone with PMLD is costly (see elsewhere in this consultation) and families rely on the regular payment they currently receive possibly not being able to afford to trade any of this for reduced energy tariff, lump sum etc."
PAMIS

Mobility component

6.242 The Scottish Government set out its proposals for the mobility component in Part 2 of the consultation document.

Question - Should the new Scottish social security system continue to support the Motability Scheme? Please explain why.

Table 6.14 Should the new Scottish social security system continue to support the Motability Scheme?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	117	96%	5	4%	122
Organisations	76	97%	2	3%	78
All respondents answering	193	97%	7	4%	200

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication). Rounding percentages to the nearest whole number has led to the overall breakdown in the table to add to 101%.

6.243 In total, 200 respondents answered this question. Almost all respondents (97%) agreed that the Scottish Government should continue to support the Motability scheme. There was overall support from across respondent groups.

6.244 Further explanation were given by 175 respondents.

Reasons for supporting the Motability scheme

6.245 Three very positive aspects of the current scheme were reported by respondents:

• A large number of respondents spoke of the difference that the scheme makes to the lives of disabled people. The scheme was described as a 'lifeline' and respondents spoke of benefits in such as independence; reducing social isolation; and providing opportunities to work.
• Some respondents spoke of the benefits of the financial support to provide mobility, and of the wrap round leasing arrangement.
• Some respondents stressed the importance of the scheme in rural areas, both because of the distances to services and the relatively limited access to public transport.

"The Motability scheme is awesome. It is quick, simple, efficient and flexible. It is one of the best benefits available to disabled people. Please keep. Without Motability, I would have far less freedom."
Individual

"For many people living in rural isolated areas where public transport is limited or non-existent access to a car is an essential part of life. This is especially true for vulnerable people with health conditions or impairments particularly those with mobility issues, as they will rely on the vehicle as means for everyday life including attending doctor / hospital appointments."
Highland Council

Areas for further consideration

6.246 Some respondents said that the opportunity should be taken to widen access to the scheme. The main suggestions were to:

• remove the age limit - and allow those over 64 access;
• allow access to Motability for all people entitled to disability benefits;
• change the criteria for entitlement so that the relevant distance is increased from 20 metres to at least 50 metres;
• avoid people losing out when transferring from DLA to PIP; and
• consider full protection for those going through an appeals process - with a claimant keeping the car (at least) until after the appeal outcome is known.

"The Scottish Government should seek to reform the rules applying to situations in which entitlement to disability benefits is lost and the claimant is in the process of challenging the decision. Case evidence suggests that claimants often lose their vehicles in these circumstances, despite eligibility for disability benefits subsequently being reinstated."
CPAG Scotland

"The continuation of the Motability scheme as it functions under DLA should be considered in the transition to PIP. The assessment criteria for mobility under PIP, as opposed to DLA, leaves fewer people on the higher rate of mobility allowance and consequently unable to use the scheme. This has resulted in a number of DLA claimants who are dependent on Motability being removed from the scheme when they are transferred onto PIP. The negative effect of the difference in provision between DLA and PIP ought to be mitigated to ensure the continued benefit to claimants of the Motability scheme."
Action for M.E.

6.247 A few respondents said that there was a need for a smooth transition from the UK Government to the Scottish Government. They suggested that the existing scheme should be retained (at least for a period) and spoke of the advantages of economies of scale in a UK programme. A few suggested that there should be a dedicated scheme for Scotland. Different suggestions were made about who might run this, with a dedicated Scottish company, the Health and Social Care Partnerships and the Scottish Government all being mentioned.

Reasons for not supporting the Motability scheme

6.248 A few respondents argued that the focus on private cars to improve mobility was having an adverse impact on the development of a more effective public transport infrastructure, which would improve access for all.

"The money currently used for the Motability scheme may well be better spent on better infrastructure for public transportation. For example, a bespoke bus service or car sharing scheme only available for those with mobility issues might be better value for money."
Aberdeenshire Council

Question: How could the new Scottish social security system support older people with mobility problems not eligible for a mobility allowance?

6.249 There were 153 responses on how the new Scottish social security system should support older people with mobility problems not eligible for a mobility allowance (97 individuals and 56 organisations).

6.250 Overall, the most commonly mentioned themes were:

• proposals for change to existing benefits;
• alternative transport solutions;
• improved alignment of mobility schemes; and
• widen access to support for travel costs.

Proposals for change to existing benefits

6.251 A large number of respondents suggested that the system should be changed. Respondents suggested three main ways that this could be done:

• by introducing a mobility element for pensioners getting Attendance Allowance;
• by disengaging age criteria from PIP assessment; or
• by merging AA and PIP.

"Currently people whose disabilities affect their mobility once they are aged 65 or over, do not qualify for any mobility related benefit. Consideration could be given to introducing a Mobility component into Attendance Allowance."
North Ayrshire Council

"A merger of AA and PIP should be considered to remove the age discrimination currently affecting people aged 64+ who are not eligible to apply for PIP. Doing this would enable older people's eligibility for Motability (or future replacement scheme). We feel this is the simplest, most cost effective way to support older people's mobility needs."
Glasgow Disability Alliance

"Many of the disabled people at our engagement events favoured extending the mobility component of PIP and / or DLA to older disabled people. They felt it was unfair and discriminatory that older disabled people whose mobility was impaired received no support with their mobility costs. However, there was some acknowledgement that simply extending entitlement to a large group of older disabled people would be expensive and that funding would need to be identified to do this."
Inclusion Scotland

6.252 In addition, a few respondents believed that the best solution was to create a single disability benefit, and that this should remove the need for a separate mobility component. A few suggested an increase in the basic pension to allow older people to be better placed to pay transport costs.

Alternative transport solutions

6.253 Many respondents suggested that a wider range of transport solutions could be developed and supported. These included community based transport; dial-a-bus; taxi vouchers; taxi sharing; and increased travel concessions (train and ferry).

"Review the taxi card scheme to ensure that people who cannot use public transport have the same opportunity to travel as people have in receipt of the bus pass."
Scottish Older People's Assembly

Improved alignment of mobility schemes

6.254 A few respondents highlighted the importance of ensuring that national mobility schemes and local schemes provided by local authorities and Health and Social Care Partnerships were carefully aligned to have maximum impact.

Widen access to support for travel costs

6.255 A few respondents suggested that supporting carers' travel costs could be helpful for disabled people. And a few respondents noted that a change in mobility support for the large and growing population of older people would be very expensive.

Question - How could the new Scottish social security system better support people of all ages with mobility problems who are in receipt of a mobility allowance?

6.256 There were 117 responses on how to support people of all ages with mobility problems who are in receipt of a mobility allowance (71 individuals and 46 organisations).

6.257 Some respondents said that the Scottish Government should retain (or retain and build on) the existing mobility schemes. Other key themes emerging were:

• develop a range of accessible transport options;
• automatic passporting to mobility schemes;
• fairer and more equitable assessment criteria;
• improved access to advocacy and advice; and
• role of Health and Social Care Partnerships in supporting mobility.

Develop a range of accessible transport options

6.258 Some respondents said that transport had to be made more accessible for disabled people. Suggestions included promoting community transport; the use of taxi vouchers; improved public transport infrastructure; and concessions for train travel. A few of these respondents spoke particularly of the need to ensure that staff working in transport (including buses, taxis, trains and aeroplanes) were properly trained in dealing with disabled people in a sympathetic manner. This would be in line with the Scottish Government's Accessible Transport Strategy.

"Accessing wheelchair accessible taxis is currently quite difficult depending on where you live. There are small numbers of them, they require to be booked days or weeks in advance. High taxi rate makes it costly for some families to transport their cared for person to places such as respite (potentially a 20 mile round trip or more). Something that reduces this type of cost would be beneficial."
SPAEN

Automatic passporting to mobility schemes

6.259 A few respondents suggested that all those with mobility awards (whether at low, medium or high rate) should have access to Motability and similar schemes. A few suggested much greater use of passporting - so that once someone was eligible for a mobility award, a number of other supports should be made available automatically.

"The mobility allowance should continue as a passport - though should not be the exclusive route to access entitlements such as Blue Badges, travel pass, etc."
CPAG Scotland

Fairer and more equitable assessment criteria

6.260 A few suggested that there should not be an age restriction to access support. A few also wanted to see improvements in mobility assessments, which it was felt were too simplistic.

"We strongly feel that age barring restrictions should be lifted - i.e. for younger disabled children and for older disabled people to enable them to receive support related to their own mobility needs."
Glasgow Disability Alliance

"The problem is for those with sometimes severe mobility problems who do not receive a mobility allowance. The assessment needs to be more realistic."
Aberdeen Action on Disability

Improved access to advocacy and advice

6.261 A few respondents said that there was a need for improved independent advocacy and advice.

"It is important that people are able to access independent advice and advocacy services and are advised of their right to do so. The social security agency should signpost people to organisations that will be able to support them throughout the process."
The Poverty Alliance

Role of Health and Social Care Partnerships in supporting mobility

6.262 A few respondents felt that mobility support should be provided by Health and Social Care Partnerships, rather than through the social security budget.

"It may be better to consider mobility in the context of health and social care rather than linked to benefits entitlement, reflecting that mobility is intrinsically linked to a person's overall well-being."
PAMIS

Additional support

6.263 The Scottish Government set out its proposals for additional support in Part 2 of the consultation document.

Question - What kind of additional support should be available for people who need more help with their application and during assessment?

6.264 There were 188 responses to this question (104 individuals and 84 organisations).

6.265 Overall, the most commonly mentioned themes were:

• simplify the application and assessment process;
• improve access to information and advice at the local level;
• increased support for advocacy services; and
• local and accessible assessment centres.

Simplify the application and assessment process

6.266 Some respondents suggested that the whole system should be simplified. It was felt that if this was done, that the need for additional support would be very greatly reduced. Specific suggestions included overhauling the application and assessment process; improved training of assessors; and making sure that each claimant had a named person within the social security agency.

"A clear, simple application process, featuring straightforward wording of documents and navigation of web pages is essential if uptake of benefits is to be maximised."
Individual

"In fact the system should be the one filling the forms. A system that asks people to apply and fill their own application is a system that is looking to find excuses to deny entitlement to the many while privileging the few who have the know-how."
Individual

Improved access to local information and advice

6.267 A large number of respondents believed that there would be an on-going need to provide access to information and advice. Respondents raised a number of points:

• Most of those making this point stressed the importance of information and advice services being appropriately funded. Some drew attention to the pressures on information and advice services because of reducing budgets. Respondents felt that information and advice services should be free for claimants.
• Many respondents stressed the importance of good signposting to available information and advice services, with some suggesting that national standards for information and advice delivery should be in place.
• Most of those seeking information and advice services said that the independence of the advisors was important, as was the accuracy of the information provided. Most felt that this advice and information role was best delivered by Third Sector organisations. However, a few suggested that skilled advisors might be employed within the new social security agency or within the Scottish Government.
• Most of those responding felt that information and advice services should be local and accessible. Some mentioned the value of face to face discussions and home visits for those that needed this. A few suggested that information and advice services should be located in places that people who might apply for support would go - such as GPs surgeries. Some suggested that there were advantages of tailored services rather than generic services.

"Carers at many of our events said they really valued the support they received from advice workers at their local carer centre who were able to provide advice on social security benefits and assistance with form filling."
Carers Scotland

"Independent advice plays a key role in a well-functioning social security system, including support with entitlement, take-up, applications, complaints, appeals, access to information, outreach and continuous improvement."
Citizens Advice Scotland

"Ensure that there is local info, advice and representation in locality. For rural areas this is a significant problem. At present the independent advice agencies are underfunded and slowly disappearing."
Gordon Rural Action

"Overwhelmingly, people stated that they would like tailored support services. Advice services that are tailored for their specific conditions as opposed to generic advice agencies. For example, advice workers who specialise in mental health conditions, advice services for those with learning disabilities and specific advice agencies tailored to physical disabilities."
AdvoCard

Increased support for advocacy services

6.268 Many respondents stated their support for advocacy services being made available. A few others stated that claimants should be able to be accompanied by a supporter, mentor or friend at any assessments.

"We have seen the hugely positive difference that can be achieved by using an advocate at the different stages of the social security process. The 'success' rates for people who use the services of an advocate are significantly higher than those who do not afford themselves of the opportunity for assistance. Currently, the only groups of people within legislation who are entitled to be informed how to obtain the services of an advocate are people with mental health issues and those with a learning disability. We would like to see this right to advocacy extended to all who may require that level of support."
Scotland's National Action Plan: Right to an Adequate Standard of Living Reference Group

"An advocacy system, where independent help can be given for form filling, used to be available in most areas but this has slowly been taken away as an option for many people. Maybe a mobile advocate who could help people with applications and travel to assessments with them could be possible."
Individual

Local and accessible assessment centres

6.269 A few respondents argued for assessment centres to be local and accessible. Some of these suggested that home-based assessments should be carried out for those that need them.

Alignment with other devolved services

6.270 The Scottish Government set out its proposals for alignment with other devolved services in Part 2 of the consultation document .

Question: How could disability benefits work more effectively with other services at national and local level assuming that legislation allows for this?

6.271 There were 146 responses to this question (71 individuals and 75 organisations).

6.272 Overall, the most commonly mentioned themes were:

• more effective joined up working;
• greater focus on information sharing; and
• a person-centred approach.

More effective joined up working

6.273 A large number of respondents supported improved joined up working between interested organisations. Most commonly, responses referred to effective working between the social security agency and Health and Social Care Partnerships. Respondents also referred to links with the justice system, employability services and vocational rehabilitation services. Reference was also made to the importance of signposting, improved information and advice and, possibly, staff co-location.

6.274 A few respondents recommended that each applicant should have a key worker who should be their point of contact throughout the process and would work across all the organisations involved.

"Professionals must begin by relinquishing their hold on their own services, they must be told to do this. Working together is the only way forward."
Individual

"Specifically, participants thought there should be clear links between services dealing with disability benefits and other services for disabled people, so that those services could advise about entitlement to benefits and vice versa. Some thought there should be a specific person responsible for identifying and putting together a package of support for a disabled person."
Citizens Advice Scotland

" HIV Scotland would envisage that a new Scottish agency would work collaboratively with existing services, including health and social care providers. This would ensure that claimants are better supported when accessing the social security system."
HIV Scotland

6.275 A few respondents stressed that joint working should not lead to the merger of the benefits system and health and care provision. A few expressed concern that local authorities were increasingly using DWP benefits to subsidise care provision.

"ENABLE Scotland strongly supports the idea that those delivering the new devolved benefits see themselves as working alongside other services that are often crucial for people who have learning disabilities. This could bring opportunities to help develop the knowledge of those delivering the benefits to give them a rounded view of the services that people with disabilities might access and the difficulties they often face. We are clear however that social security is a distinct policy area in its own right and must remain as such."
ENABLE Scotland

"Many recipients pay a contribution to the cost of their care based on the amount they receive in benefits. We urge the Scottish Government to be cognisant of the interaction between social security and social care funding and the possible implications for individuals. For example, it would make little sense to increase benefit levels only for this increase to be absorbed by increases in local authority care charges."
Scottish Commission for Learning Disability ( SCLD)

More focus on information sharing

6.276 Many respondents supported personal information being shared, on a confidential basis, between professionals. Some of these stated that this should only be done following informed consent from the applicant.

6.277 Some respondents suggested that a single shared assessment should be used, with the information shared with each of the organisations directly involved. This could lead to increased automatic entitlement to or passporting of other services.

"If a new Scottish disability benefit were to be designed from scratch, a decision would have to be made on the correct balance of investment between cash benefits paid to individuals and public services free at the point of delivery to disabled people. Under the current system, if information sharing were to be more extensively used in support of benefit applications, information gathered through (for example) the PIP application and assessment process might equally be shared with other service providers to ensure all available support was being provided."
Individual

A person-centred approach

6.278 Some respondents expressed support for a greater focus on person-centred services, including Self Directed Care.

"Improving people's experience must be a shift away from the current reactive fragmented model of advice and support normally when an individual has encountered problems with their benefits, towards one that is more proactive, holistic and preventive, in which people with health conditions or disabilities are encouraged to play a central role in the support they receive from the social security system, devolved services and the public sector.

A wrap around shared assessment that identifies support requirements from the outset, and thereafter puts in place the appropriate levels of support, would significantly improve the way in which people are supported."
Highland Council

Question: How do you think this might be achieved?

6.279 There were 106 responses to this question (56 individuals and 50 organisations). Most respondents referred to their responses to the previous question.

6.280 Overall, the most commonly mentioned themes were:

• strengthened multi-agency work;
• more effective information sharing;
• a person-centred approach;
• more streamlined assessment process; and
• access to specialist advice and support .

Strengthened multi-agency work

6.281 Many respondents suggested ways that multi-agency work could be strengthened. A few of these specifically mentioned the importance of service users being involved in the design of the new arrangements. Comments were made on the need for organisational culture to change and for effective partnership to be an outcome for organisations and for success in joint working to be rewarded.

"There needs to be a multi-agency, holistic approach to assessment / review. The current paradigm is that agencies are very much working in partnership but still retaining separate governance, identity and most importantly of all, budgets. Greater collaboration is required which means a change of culture and conversations and a way of working which includes Public Agencies, Third Sector, Independent Sector and Communities. This is some way off as agencies are struggling with their own survival but the current context also offers opportunities for changes to be made. In order for greater collaboration, there must be an accessible and easy way for any request for supporting information to be received quickly. This will depend on health, social work and other agencies to work together and cooperate with each other and the process."
Glasgow Disability Alliance

More effective information sharing

6.282 Some respondents referred to the arrangements that would need to be in place to deliver effective information sharing. Most of these referred to improved regulations about data sharing and a few referred to informed consent or the requirement to have improved IT to ensure easy, timely and confidential sharing of information.

A person-centred approach

6.283 A few respondents reinforced the need for a person-centred approach.

"Having a new social security system offers an opportunity for a genuinely person-centred approach which recognises that it is the applicants who know their condition or disability best and how it affects them.

There needs to be an understanding of the impact a condition has on people's lives. Questions need to be designed to help applicants articulate the impact their condition or disability has on them and could involve an individual describing their condition or disabilities rather than responding to questions about what they can or can't do."
Fife Council

More streamlined assessment process

6.284 A few respondents suggested that the assessment process should be improved and that a single assessment should be used for benefits and access to services.

Access to specialist advice and support

6.285 A few respondents repeated the importance of access to specialist advice centres. A few also commented on the importance of claimants having a single point of contact through a key worker.

Question - What are the risks?

6.286 There were 110 responses to this question (60 individuals and 50 organisations). Many respondents felt that there was a risk of data breaches; of shared data being used inappropriately; or of out of date information being used.

6.287 Many respondents felt that there was a risk of a lack of multi-agency cooperation - with a risk of failure to share information or to design integrated services.

"Separate entities seek to protect their own position and do not buy into the overall vision. This will require careful management and direction from the highest level. The process of alignment should be transparent and be designed to accommodate future transfer of powers."
Ayr Housing Aid Centre

"Failure of integration of various different databases and computer systems, distrust and competition among agencies if funding is gained through certain criteria and targets that mean sharing knowledge is counter-productive."
Individual

6.288 Some respondents were concerned that a move to a single assessment would mean that if the assessment was 'incorrect' then this would affect all benefits and services.

"Closer association between disability benefits and social care always risks creating an all or nothing system where those not eligible for disability benefits struggle to access social care services, and vice versa."
CPAG Scotland

6.289 Some respondents saw a risk that Scotland wide, non-means tested cash disability benefits would not be retained - and expressed concern that there would be an increasing move for disability benefits to be used to pay for support care costs.

"It is vital that a Scotland-wide system of non-means tested cash disability benefits is retained, and that these are not clawed back in care charges or reductions to other benefits."
Scottish Council for Voluntary Service

6.290 Some respondents saw a risk from the cost and bureaucracy of the proposed system.

6.291 A few respondents felt that there was a danger of an impersonal system, where disabled people were subject to a non-human, 'digitalised' approach to assessment and delivery of services.

6.292 A few respondents also noted that the greatest risk was not making changes to the current system.

Industrial Injuries Disablement Benefit ( IIDB)

6.293 The Scottish Government set out its proposals for IIDB in Part 2 of the consultation document.

Question - If DLA and PIP help meet the additional costs of disability, what is the role of IIDB and its supplementary allowances (Constant Attendance Allowance, Reduced Earning Allowance etc.) in the benefits system?

6.294 There were 99 responses to this question (55 individuals and 44 organisations). However, many simply stated that they did not know what steps needed to be taken; that they were not experts in the area or provided a broader response.

6.295 Overall, the most commonly mentioned themes were:

• role of IIDB and its supplementary allowances;
• refining the system; and
• discontinuing IIDB.

Role of IIDB

6.296 A large number of respondents supported the continuation of IIDB as a separate scheme. Some of these suggested ways that the current system could be improved. However, some respondents stated that there should not be a separate IIDB. There was a marked difference between the views of organisations and individuals that responded. Continuation of the scheme was supported by 30% of individuals and 97% of organisations.

Compensation for injury at work

6.297 The main reason given for retaining the IIDB scheme was its role in compensating those who were injured at work.

" IIDB is a non-contributory, non-means tested benefit paid to compensate those injured at work. It is not an income replacement benefit but a compensatory benefit."
Rights Advice Scotland

6.298 These respondents made clear their view that the scheme was not related to the extra costs arising from disability, but was a compensation for earnings and health, lost as a result of industrial accident or disease.

" IIDB, unlike DLA and PIP is not paid to cope with the extra costs arising from disability, but as a compensation for earnings and health lost as a result of industrial accident or disease."
Inclusion Scotland

Reduced Earning Allowance ( REA)

6.299 A few respondents stated that the REA benefits have a small and shrinking number of people who are eligible since this is limited to accidents or diseases arising before 1990, and therefore led to very little extra cost.

Constant Attendance Allowance ( CAA)

6.300 A few respondents noted that entitlement to CAA was limited to claimants with entitlement to Industrial Injuries Benefit or War Disablement Pension. One of these respondents suggested that there was an opportunity for the new Scottish social security agency to review how CAA currently operates.

"The Scottish Government now has the opportunity to review this issue. One possible recommendation would be to merge the component parts of CAA and ESDA into one lump sum payment, payable in the first year, in addition to the weekly award of IIDB, followed by weekly payments after the first year."
Clydeside Action on Asbestos

Refining the system

6.301 A few of those who responded described ways in which the system should be refined. These were mainly around the list of prescribed diseases (which it was argued reflected the more industrial age in which the scheme was introduced) and the gender impact of this.

"The current scheme is perceived by some to be unequal in terms of payment amounts / gender and doesn't necessarily reflect the changes in work place safety and / or the nature of work in Britain being very different ..."
COSLA

Discontinuing IIDB

6.302 Some respondents stated that the IIDB scheme should cease. The main reason given for this was that IIDB should be merged with other systems, with a few suggesting a single system for all payments to people with disabilities. A few respondents suggested that employers should take full responsibility for compensation for injuries and diseases sustained at work.

" IIDB should be scrapped, and folk come under the standard disability payments. Lump sums of compensation could be paid by the employer's insurance, and ongoing disability benefits could also be reclaimed from supplier. [People should] receive sufficient income to support a decent standard of life."
NHS Lanarkshire

Question - What is right with the IIDB scheme? What is wrong with the IIDB scheme? Please explain your answers.

6.303 There were 117 responses to this question (71 individuals and 46 from organisations). However, many simply stated that they did not have the information to give a substantive response or did not respond directly to the question. Therefore, there were 71 substantive comments on this question.

What is right with the IIDB scheme?

6.304 Views on IIDB were generally positive. For example, Citizens Advice Scotland noted that the IIDB scheme "can provide crucial support for people who have been injured or developed a long term condition from carrying out their jobs". Here to Help Mobility Company Limited described IIDB as a "necessary benefit to support individuals", and individuals described IIDB as "a worthwhile benefit" and "vital". A few respondents suggested that IIDB could be incorporated into Disability Living Allowance and Personal Independence Payments.

6.305 In considering the positive aspects of the scheme, some respondents highlighted the importance of the scheme not being means tested and some welcomed the fact that it was a 'no fault' scheme.

"It is a no fault scheme so can be paid to those who do not have the wherewithal to sue an employer or are unable to successfully attribute blame. It is a non-means tested benefit so can be paid to claimants who have other household income or savings."
Midlothian Community Planning Partnership / Midlothian Council

What is wrong with the IIDB scheme?

6.306 Although IIDB was generally seen as important by respondents, many responses highlighted areas for improvement in the scheme. The main areas identified were:

• Some respondents said that the list of prescribed illnesses was too limited and out of date. It was seen to be based on a more industrial world, and did not reflect today's world of work.
• Some respondents drew attention to the complex application process.
• Some respondents were concerned that IIDB was taken into account in relation to means tested benefits.
• Some respondents felt that the scheme was not well publicised.
• A few respondents felt that employers should take more (or all) responsibility for compensating those with illnesses or conditions arising from their work.
• A few respondents suggested that there should be better alignment with other support. The two main suggestions were better links with employability support projects to help people back into the employment market; and merging the IIDB with DLA and PIP.
• A few respondents said that the scheme should cover self-employed and agency staff.

Questions - Should different approaches be taken for people with life limiting conditions compared to people with less severe conditions?

Table 6.15 Should different approaches be taken for people with life limiting conditions compared to people with less severe conditions?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	67	81%	16	19%	83
Organisations	35	97%	1	3%	36
All respondents answering	102	86%	17	14%	119

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.307 In total, 119 respondents answered this question. Most respondents (86%) agreed that different approaches should be taken for people with life limiting conditions. Individuals were slightly more likely than organisations to disagree. There was overall support from across respondent groups.

Question - What would be the advantages and disadvantages of such an approach?

6.308 There were 103 responses to the follow up question on the advantages and disadvantages of this approach (59 individuals and 44 organisations).

6.309 Most of the responses stated advantages for taking different approaches for people with life threatening conditions. The main advantages identified were:

• Some respondents said that it would allow the establishment of a fast track process, with automatic entitlement and less frequent (or a one off) assessment. This would lead to less stress for claimants and the potential for administrative efficiencies.
• Some respondents said that taking different approaches would bring greater fairness and equity to the process, and be more responsive to an individual's particular condition or circumstances.
• A few respondents said that it could allow different payment arrangements - for example giving the same compensation over a shorter period; the opportunity to make a lump sum payment; or the payment to dependents in the case of death as a consequence of industrial injury.

"... entitlement should be automatic and ongoing to minimise unnecessary distress and negotiation of complex systems at a time when stress levels and difficulties are already at very high levels ...Special rules and automatic entitlement would increase administrative efficiency; increase the number of claims that are easy to resolve; and increase transparency and ease of use for clients."
Children in Scotland

6.310 Some respondents felt that IIDB should be designed around the needs of each individual, and this would help to ensure that appropriate responses were tailored to meet the needs of people with life limiting conditions.

6.311 A few respondents suggested that IIDB should be replaced by an enhanced 'whole of life' disability benefit.

Question - Are there situations where a one off lump sum payment would be more appropriate than a regular weekly IIDB benefit payment?

Table 6.16 Are there situations where a one off lump sum payment would be more appropriate than a regular weekly IIDB benefit payment?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	31	57%	23	43%	54
Organisations	20	67%	10	33%	30
All respondents answering	51	61%	33	39%	84

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.312 In total, 84 respondents answered this question. Most respondents (61%) agreed that there were situations where a one off lump sum payment would be more appropriate. However, a substantial minority (39%) disagreed. Most disagreement came from a few local authority respondents.

Question - What are they, and why? What would be the advantages and disadvantages of such an approach?

6.313 There were 81 responses to the follow up question on the advantages and disadvantages of this approach (43 individuals and 38 organisations). Most of these respondents had answered 'yes' to the closed question. Comments mainly related to the advantages and disadvantages, rather than identifying specific situations.

Advantages

6.314 The main advantages mentioned by respondents were:

• Some respondents suggested that a lump sum payment could allow for the purchase of specialist equipment or of making necessary adaptations.
• Some respondents said that a lump sum, which could be treated as a capital payment, may be better than a regular income for those that were in receipt of means tested benefits.

Disadvantages

6.315 The main disadvantages mentioned by respondents were:

• Some respondents were concerned that (depending on length of life) a one-off lump sum might be lower over the period than a regular, on-going payment. Respondents drew attention to the added difficulties of budgeting on a fixed sum when one's life expectancy was not known.
• A few respondents felt that any lump sum should be paid by employers (possibly through insurance).
• A few respondents felt that any decision on a lump sum should be made by the individual claimant - and that no-one should be forced to take a one-off lump sum in place of regular payments unless they wished to do so.

"Where the claimant is entitled to means tested benefit, a one off payment could be paid without necessarily affecting entitlement (would be treated as capital not income), but a disadvantage would be that overall entitlement may be reduced by loss of benefit over time."
West Lothian Council

"It would mean applicants would have to gamble against a lump sum payment over the length of any difficulty in their care or in some cases their life expectancy. It would ... potentially cause an increased burden on social security and local authorities / HSCPs in future when the lump sum had gone and care services still have to be provided."
East Ayrshire Council

Question - Should the Scottish Government seek to work with the UK Government to reform the IIDB scheme?

Table 6.17 Should the Scottish Government seek to work with the UK Government to reform the IIDB scheme?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	43	67%	21	33%	64
Organisations	19	61%	12	39%	31
All respondents answering	62	65%	33	35%	95

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.316 In total, 95 respondents answered this question. Most respondents (65%) felt that the Scottish Government should seek to work with the UK Government to reform the IIBD scheme. However, a substantial minority (35%) disagreed. Disagreement came mainly from a few local authority respondents.

Question - If yes, what should the priorities be? What barriers might there be to this approach?

6.317 72 respondents provided comments in relation to this follow-up question (39 individuals and 33 organisations). Comments were mainly made by those who had answered 'yes' to the previous question.

Priorities

6.318 The responses on priorities fell into two main categories - general points about the way that the two Governments might work together and specific comments on the improvements that could be made to the IIDB system.

6.319 The general points were:

• Some respondents reflected on the fact that the UK Government was intending to review IIDB and suggested that it would be appropriate for the Scottish Government to seek to reach agreement to a joint review with the UK Government. Often these respondents wished the Scottish Government to retain the right to make its own decisions if the review did not lead to an outcome which met their aspirations.
• A few respondents drew attention to the fact that there would be links between the powers transferred to the Scottish Government and those reserved by Westminster. The UK Compensation Recovery Unit was raised. It was stated that arrangements will need to be put in place with the UK Government to ensure that recovered benefits are returned to the Scottish social security system.

6.320 The more specific points about priorities related to points that had been made to earlier questions about IIDB. A few respondents mentioned the responsibilities of employers for compensation for industrial injury; the need to modernise the test and criteria for IIDB; the desire to have IIDB disregarded in terms of means tested benefits; and the replacement of IIDB with a 'whole of life' disability support.

Barriers identified

6.321 There were two main barriers identified:

• Some respondents referred to the potential conflict between the Scottish Government's "fairer" approach and the UK Government's approach to welfare reforms, which was considered to be predicated on saving benefit costs rather than improving the service and benefits available to recipients.
• A few respondents stated that the Scottish Government should determine priorities from a Scottish perspective.

Severe Disablement Allowance

6.322 The Scottish Government set out its proposals for severe disablement allowance in Part 2 of the consultation document.

Question - Do you agree with the Scottish Government's approach to Severe Disablement Allowance? Please explain why.

Table 6.18 Do you agree with the Scottish Governments approach to Severe Disablement Allowance?
	Yes		No
Respondent group	Number	%	Number	%	Total
Individuals	64	83%	13	17%	77
Organisations	33	83%	7	18%	40
All respondents answering	97	83%	20	17%	117

Note: A full breakdown of responses by respondent group is included in Annex 2 (available to download separately as part of this publication).

6.323 In total, 117 respondents answered this question. Most respondents (83%) agreed with the Scottish Government's approach to Severe Disablement Allowance.

6.324 There were 92 responses to the follow up question on the advantages and disadvantages of this approach (51 individuals and 41 organisations).

Reasons for agreeing with the Scottish Government's approach

6.325 Those who agreed with the Scottish Government's proposed approach focused on three main points:

• Many respondents welcomed the continuity that this would provide and argued that for the small and reducing number of people supported, any reform would be unsettling and unnecessary.
• Some respondents drew attention to the fairness of this approach.
• A few respondents supported the continuation of SDA for existing claimants, but recommended that the Scottish Government should use its powers to offer enhanced support to severely disabled people who are not able to access SDA following its closure to new applicants in 2001.

"It is submitted that the Scottish Government in proposing to accept the withering on the vine approach to Severe Disablement Allowance is to fail to recognise the opportunity it presents to offer enhanced support to severely disabled people.

SDA is an income replacement benefit for those without a [sufficient] national insurance history... When closed to new applicants in 2001 the arrangements put in place at that time provided for severely disabled young people who were unfit for work to satisfy the national insurance conditions and receive instead [support] … through a mechanism known as Incapacity in Youth. As part of its Welfare reforms the UK Government abolished [Incapacity in Youth] for new claimants, effectively making severely disabled people increasingly or wholly dependent on means testing for their weekly income.

The opportunity to provide young people in particular with a guaranteed minimum income free from the limitations of a means test is one that the Scottish Government should embrace and, rather than allow to disappear, develop."
Rights Advice Scotland

Reasons for disagreeing with the Scottish Government's approach

6.326 A few respondents gave reasons why they disagreed with the Scottish Government's proposed approach. These included suggestions to stop the scheme entirely; to merge it with other programmes; or to leave the responsibility to the UK Government.