Alzheimer Scotland

Scottish Government – Social Security Consultation

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Introduction Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people living with dementia to ensure their views and experiences are heard. We provide specialist and personalised services to people living with dementia, their families and carers in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website (www.alzscot.org) and our wide range of publications. Alzheimer Scotland welcomes the opportunity to shape the future of Scotland’s social security system. We would like to acknowledge the contribution of people with dementia and carers who took the time to share their experiences of the existing social security system; we have used these experiences to inform our response.

Consultation Process The Scottish Government should give consideration to extending the period of engagement where consultations are of a size and complexity such as this. It is unreasonable that a three month timeframe is universally applied without regard to the content, length or complexity of consultations. In addition, the Scottish Government should ensure that ‘easy read’ versions of consultation documents are published at the time of the launch of the consultation, not weeks after. Late publication of these ‘easy read’ versions diminishes the ability of people who rely on these versions to contribute, especially in instances such as this where the other documents are prohibitively long and complex, and are not easily amended. These versions should not be considered as secondary documents which are supplementary to the full consultation documents but instead should be regarded as a central component of the written consultation process. Whilst we appreciate that unforeseen circumstances may necessitate the late publication of an ‘easy read’ version, the Scottish Government should, in these cases, extend the deadline of the consultation by the equivalent amount of time to ensure an equal opportunity to respond.

General Comments Alzheimer Scotland recognises the considerable opportunity that the devolution of some elements of the social security system in Scotland represents and strongly welcomes the Scottish Government’s approach, which has included a strong focus on improving the experience of people applying for support. There are two crucial issues concerning the transfer of the new powers to Scotland. The first of these concerns the transfer of existing social security payments from the Department of Work and Pensions to the new Scottish Social Security Agency (SSSA) [this

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consultation response assumes this will be the adopted model for the delivery of the devolved benefits]. Doing so will inevitably add an additional layer of administration; it is incumbent upon the Scottish Government to ensure that this connects to existing structures. The importance of continuity of service with no disruption to the delivery of payments to the individual cannot be overstated. The second measure of success for the new system will be the extent to which people who use it have confidence and trust in its ability to meet their needs, treat them fairly and effectively administer the social security payments for which it has responsibility. If the transition is poorly executed and results in delayed or missed payments, it could irrevocably harm public and recipient trust and perception of the new system, ultimately undermining the introduction of the proposals set out within the consultation document. Alzheimer Scotland understands that there exists considerable knowledge and experience within the current social security system which it will be important to retain as part of the transition of social security powers to Scotland. However, whilst we are conscious of the need for stability and continuity of service, we believe that the fundamental ethos and culture which has been fostered in the existing system as a result of sustained pressure to reduce the number of claimants, coupled with the introduction of punitive measures, has created a stigmatising and disempowering system. As it is yet unclear how much of the current system will continue in its current form, it is imperative that the Scottish Government ensures that this culture does not transfer into the new system. In discussing social security with people with dementia and carers as part of this consultation, we received a powerful message that people actively avoided engaging with the current social security system, either as a result of a negative experience during the application and/or assessment phase, or due to an inherent fear and distrust of the current system; people believe that the system is punitive in nature and is actively seeking to find a reason to remove their support. It is therefore evident that there must be a fundamental change in the way in which the social security system in Scotland operates to rebuild trust and confidence in people receiving support from the system. Alzheimer Scotland has divided its response into the sections which broadly reflect the consultation document. However, some sections are unlikely to be relevant for people with dementia or their carers; these have therefore been omitted.

A Principled Approach Fixing the principles in legislation/Claimants Charter Rights-based approach Alzheimer Scotland welcomes the Scottish Government’s approach in establishing a social security system in Scotland which treats people in need of support with dignity and respect. We broadly agree with the five principles proposed within the Scottish Government’s previous ‘A New Future for Social Security in Scotland’ publication. In addition, it is welcome that the consultation document uses the language of rights within the consultation

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document, including references to the empowerment of individuals and the need to give people greater choice and control over how they receive support from the system. It is therefore disappointing that there is no explicit mention of rights within the consultation document. We believe there is demonstrable overlap between the language and proposals within the consultation document, and the PANEL principles (promoted and endorsed by the Scottish Human Rights Commission) which set out how a rights-based approach can be achieved in practice:

Participation – The consultation document recognises the importance of people’s experiences in shaping and informing improvements of the social security system, including through ‘user panels’.

Accountability – The new social security system must be easily navigable and transparent, including a clear process for appeals.

Non-Discrimination – The Scottish Government has made clear its intention for the foundation of the new system to treat people applying for support through social security with dignity and respect.

Empowerment – Creating flexibility within the system, including the proposals on lump sum payments, preferential energy tariffs etc.

Legality – Creating a legal basis on which the rights of people can be upheld, through the principles in legislation and clear structures for appeal.

We therefore believe that the current principles should be amended to reflect this human rights-based approach. There is precedence for a rights-based approach to underpin legislation, with the Scottish Government having taken this approach for the Social Care (Self Directed Support) (Scotland) Act 2013. Doing so with the social security system would establish a consistency of approach to delivering support for people, regardless of the type of support received or the institution delivering it. Fixing the Principles in Legislation/Social Security Charter Alzheimer Scotland believes that elements of both proposals should be adopted to ensure that the principles of the legislation are borne out in practice. We believe that the high-level principles should be embedded within the legislation and note the precedence of this with the Adults with Incapacity (Scotland) Act 2000 and the Mental Health (Care and Treatment) Act (Scotland) 2003, which provide legal underpinning of an individual’s rights and guide the application of the legislation. However, Alzheimer Scotland does not believe that having the principles of the legislation should preclude the creation of a ‘Claimants Charter’. If the Scottish Government is not minded to include an explicit rights based-approach as part of the principles, then it is imperative that the importance and explanation of a rights-based approach be included as part of the Charter. We propose that it be referred to as the ‘Social Security Charter’, as it should determine the way in which the entirety of the social security system ought to run.

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We envisage that this Charter would act as a definitive statement of how the social security system should operate in practice, including how people applying for support should be treated. The Charter should also:

Provide additional information on the principles based in statute, detailing how these are to be applied in practice.

Include information on how the appeals process works and where people should address complaints.

Set out which specific benefits are under the remit of the SSSA and where people can get further information on each benefit.

The support a person can receive to help them through the application, assessment and appeals processes.

How the process of accountability and involvement work through the ‘user panels’ and how people may go about being involved in these panels.

The Scottish Government must seek to co-produce this Charter through a process which is accessible and meaningful to people who are likely to be affected by its content. We agree that practically, a core group (advisory group) will need to be established to work out the detail and wording of the Charter, however, there must be extensive engagement and involvement undertaken, especially with people who are traditionally underrepresented or communities who have historically been less likely to engage. Alzheimer Scotland would welcome the opportunity to work with the Government to ensure that people with dementia and their carers are involved in this process and can inform the development of the Charter. Alzheimer Scotland welcomes the Scottish Government seeking to establish accountability through the duty to treat people with dignity and respect, however, the proposals do not go far enough. We believe that everyone involved in the delivery of the new SSSA must be subject to this duty, beyond those included within the consultation paper, extending to frontline staff, managers and directors, as well as any external organisation contracted to work on behalf of the SSSA, e.g. medical assessors. Furthermore, it should not solely be the principle of dignity and respect to which the duty applies, but all of the principles embedded within the legislation. In doing so, a robust framework would be established to set out how people should be treated within the social security system. Short, Medium and Long Term Outcomes Whilst we broadly agree and support the short to medium and long term outcomes described by the Scottish Government, we believe these could be strengthened. In particular:

There is overlap between the short and medium term outcomes of the ‘Scottish Social Security System’ and the ‘Other Public and Third Sector Services’ sections.

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The long term outcomes for the ‘Scottish Social Security System’ should make reference to the need for partnership working across health, social care, third, independent and housing sectors to link in with the social security system.

Within the ‘Other Public and Third Sector Services’ section, there should be greater emphasis on the contribution of the third sector, including its role in providing support and advice to people accessing social security.

As a broader point, much of the consultation document refers to the third sector in terms of the burden placed on it by the existing social security system. Whilst this is an issue, the contributory nature and expertise of the third sector in supporting people and the potential for the third sector to work in partnership as part of the new system, should be recognised. Outcomes and the User Experience and Delivering Social Security in Scotland Scottish Social Services Agency Alzheimer Scotland supports the establishment of a new Scottish Social Security Agency (SSSA) to deliver the devolved benefits in Scotland and support the majority of the devolved benefits being administered and delivered it. However, under the principle of subsidiarity, we have advocated that some of the smaller payments could be more effectively delivered at a local level by local authorities. We will address this point in the devolved benefits section of our response. Whilst it is recognised that the establishment of a new agency is a positive and necessary step in addressing some of the underlying problems of the current system, people with dementia and their carers have expressed their concern that the creation of a new agency will simply add to the complexity of the support system in Scotland. The current fragmented system between health, social care, welfare and housing is already the source of much stress, confusion and frustration experienced by people with dementia and their carers. The Scottish Government must give consideration to how better working relationships and information sharing between agencies can be established to ensure that the experience of people with dementia and their carers is improved by the proposed changes, not made more onerous. In addition, the Scottish Government should set out how it envisages the practical implementation of devolved benefits. This includes providing further detail or proposals relating to:

The method of face to face contact for information, application and/or assessment– will this be in new social security centres or run from existing Department of Work and Pensions (DWP) centres?

The way in which the system can better provide joined up support to meet the needs of an individual, without the need for visits to multiple services to provide the same information. e.g. better information sharing between different institutions when accessing different supports.

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On this latter point, Alzheimer Scotland is aware that the skill sets across professions and the different domain of each support necessitates multi-agency involvement. However, from the point of view of people with dementia and their carers, the repetitive and burdensome process of providing the same information repeatedly is time consuming, emotionally draining to the person and unnecessary. It should not be beyond the resource and ability of these organisations to find a way to better work in partnership to share information and meet a person’s needs in a coordinated way. Related to this, people with dementia and carers have indicated that if the sharing of information between institutions across health and social care (and any other relevant organisation) would help to streamline and simplify the process, they would welcome the option to consent to this. Alzheimer Scotland, in its submission to the Welfare Reform Committee, highlighted the Long-Term Conditions Financial Inclusion Partnership which operates in Glasgow as an example of the type of service which should be available. This partnership involves Glasgow City Council; Chest, Heart and Stroke Scotland; Glasgow Housing Association; NHS Greater Glasgow and Clyde; The Pensions Service; Jobcentre Plus; and Glasgow’s Advice and Information Network. This partnership programme received the Chair’s Award from the Convention of Scottish Local Authorities (COSLA) in 2012. Similarly, we are aware of existing services in Renfrewshire and Falkirk which offer a single service offering support to people to access financial support across different sectors. People with dementia and carers have explicitly stated that there is a need for a ‘one-stop shop’ service, where they can go for information, advice to maximise their income and support to complete their claims, covering local authority, devolved and reserved benefits. We envisage this as a collaborative approach between national and local government, the third sector, all levels of health and social care, and housing, providing a dual-purpose service where people receive welfare-rights advice, as well as financial and housing advice, whilst being able to apply for all relevant supports through a single advisor. Taking these concerns together, the devolved social security system represents an unprecedented opportunity not only to establish a new system of social security within Scotland, but also to establish a streamlined and coordinated system which works with existing institutions to provide an improved experience for people seeking support. User Experience – ‘User Panels’ and Involvement Alzheimer Scotland welcomes the Scottish Government’s commitment to improving the experience of people who access the social security system and to involving them in shaping the development of social security services. Whilst the consultation document has identified the key principles for coproduction, we do not believe that establishing ‘user panels’ (we suggest ‘Social Security Panels or Social Security Citizen Panels) of existing DWP claimants necessarily fulfils these principles.

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We disagree with the Scottish Government’s proposal only to include existing DWP claimants on the Social Security Citizen Panels. As we have noted elsewhere, for many people with dementia and their carers, applying for social security support will be the first time they have come in to contact with the system. People with dementia and their carers have told us that the benefits system is confusing, overly complex and is inaccessible (for example, it is not clear where to access information, support or advice). It would therefore make sense for the panels to include people who have no experience of the social security system but who may need to in future, as they could provide useful insight into the public visibility and perception of the social security system and where further work may be needed to improve awareness. Similarly, the Scottish Government must look to engage groups who may traditionally disengage with, or actively avoid, the system. As the Scottish Government seeks to build a system which removes distrust and stigma within the system, this group will have a unique perspective to offer on how to better support people accessing support or encourage people to claim the support for which they are eligible. Without further detail of how the Social Security Citizen Panels are to operate, it is difficult to assess how effective they are likely to be and to what extent they will be coproduced. From experience, we are concerned that the groups will operate solely as reference groups, with no autonomy to set their own remit or agendas and with extremely limited scope. Meetings of this kind are often unsuitable for people with dementia, especially where the formats are lengthy meetings, with considerable numbers of papers and group discussions. This is often exacerbated by agendas and papers which are sent out only a few days prior to the meeting. Taken together, this creates a format which inhibits meaningful participation and contribution for people with dementia. Similarly, carer involvement is often managed poorly, with no flexibility around convenient times, with little support for carers making daycare or other arrangements for the person for whom they care. The Panels must take steps to involve people in a way which is accommodating to their needs, going beyond traditional and rigid formats of group meetings at structured intervals. If the Scottish Government is minded to establish these panels and wishes to ensure the meaningful and coproduced involvement of people who are affected by these changes to the system, they must work with people to coproduce an engagement process which reflects the interests of the person, is meaningful to them and meets their needs. The Scottish Government must provide further information about how it plans to take forward this involvement process and address the above concerns. As with the drafting of the Social Security Charter (‘Claimants Charter’), Alzheimer Scotland would welcome the opportunity to support and work with the Scottish Government to ensure the meaningful involvement of people with dementia and their carers. Alzheimer Scotland believes that the Social Security Citizen Panels should be directly linked to the Social Security Charter (‘Claimants Charter’), with people on the panels able to directly feedback their experiences in relation to different sections of the charter, whilst also hearing about the response taken by the Scottish Government or the SSSA as a result.

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In order to ensure that there is understanding that the two are related, it would be helpful for the two to have a common name. User Experience – Awareness and Accessibility of Benefits Alzheimer Scotland welcomes the Scottish Government’s focus on the user experience of the social security system. In particular, we welcome that the Scottish Government has acknowledged the Welfare Reform Committee’s recommendation about the need for communications to written in plain English and be made available in a the format most suited to the person, including Easy Read formats. The Scottish Government must recognise that for many people with dementia and their carers, applying for benefits after a diagnosis will be their first time coming into contact with the social security system. Both people with dementia and carers have told us that in many cases they did not know that they would be eligible for social security and did not know where to go for further information, advice or support. People who had received support from Alzheimer Scotland Link Workers as part of Post-Diagnostic Support (PDS) are given information about which benefits they may be eligible for, as well as being signposted to further information and support services. However, people with dementia and their carers have suggested that this is not always done through all PDS services. Whilst Alzheimer Scotland understands the rationale behind the Digital First Approach, the Scottish Government must recognise and accommodate the significant sections of the population, including some people with dementia and their carers, for whom accessing information or applying for benefits online is, for various reasons, not an option. Similarly, the necessity to phone call centres to apply for benefits is often more difficult for people with dementia, especially as these may involve phone menus and extensive questions and conversations, which can be difficult for the person, with little/no support available. Alzheimer Scotland therefore takes the position that if the new social security system is to treat people with dignity and respect, responding to and accommodating their needs, the person with dementia and/or their carer must have a choice about the method of application which is most suited to them. Alzheimer Scotland will expand upon the application processes of benefit-specific application processes in the relevant section below. User Experience – Understanding Dementia It is important that frontline staff with an understanding of progressive illnesses, such as dementia, and about how the illness may progress, understanding that the person is likely to need increasing levels of support, accordingly helping them apply for relevant benefits to which they are entitled. This would deliver person-centred support for people with dementia and their carers, creating a single point of contact for advice and support, which people with dementia and their carers have told us is a gap in the current system.

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Alzheimer Scotland has previously worked with the DWP to deliver training to inform and raise awareness of dementia amongst professionals, to ensure that whether working directly with a person with dementia or involved in a claim, this would be approached by professionals from an informed position. Alzheimer Scotland would be willing to work with the new SSSA to ensure that all staff working within the agency are trained to understand dementia and related issues, including Powers of Attorney, Guardianship, DWP Appointeeship and the progressive nature of dementia, to ensure that they can best support a person with dementia and fairly assess their claim. User Experience – Communications Alzheimer Scotland cannot sufficiently emphasise the importance of the new social security system communicating with people with dementia and their carers in a way which is appropriate and suitable for them, both in relation to communication with the individual or resources aimed at the population. As referred to above, it is imperative that the Scottish Government recognises that its ‘Digital First’ policy will not be suitable for many people with dementia and their carers, whether for applying for benefits or maintaining ongoing communication with the system. As noted previously, for many people with dementia, having to navigate complex and telephone menus to apply for or access information about relevant social security matters is not suitable. Similarly, some people with dementia may struggle not retain information received over the telephone, making this means of communication unsuitable. The Scottish Government must ensure that the new social security system is flexible and diverse enough in its methods of communication to ascertain from the person their preference in how the social security system communicates with them. This must include ensuring that a person with relevant proxy powers (for example, welfare power of attorney, guardian etc.) is able to be involved as part of this decision. In relation to this, we would urge the Scottish Government to set out how an equivalent of DWP Appointeeship will operate under the new social security system and how transitional arrangements will ensure that existing proxies are not unduly affected by the devolution of these benefits. We welcome the Scottish Government reviewing the use of language within the system to try and reduce the use of stigmatising and demeaning language. Whilst terms such as ‘demented’, ‘senile’ and ‘sufferer/suffering’ are more obvious terms to be avoided, stigmatising language can be more subtle and indirect; however, it’s effect upon people with dementia can be no less harmful. Terms such as entitlements and benefits should be avoided, as they suggest an additional ‘privilege’ for the person receiving support. As part of this, there is a need to recognise that dementia:

Does not solely affect memory: Dementia is an umbrella term used to describe the effects of a number of illnesses which have a variety of symptoms, not only memory.

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Does not mean a person automatically loses capacity and the ability to make decisions for themselves.

Is not a condition which only affects older people and that it is not a normal part of ageing.

Equalities Alzheimer Scotland’s response has covered a number of the issues raised within the Scottish Government’s Equality Impact Assessment (EQIA). We will not repeat the specific points here, however, some of the important aspects which should be considered are:

The gender imbalance in the number of carers and the impact this has on their health, wellbeing and socioeconomic outcomes.

The uptake of benefits – the accessibility of the social security system has been prohibitively complex, resulting in many people not receiving the benefits to which they are eligible.

The provision of support through the process of application, assessment and appeals to ensure that people have ‘due process’ and equality within the system.

Ensuring equitable levels of support across benefits e.g. ensuring that someone is no better or worse off from taking a non-cash benefit or uses a benefit on an adaption that would have otherwise been covered by a local authority.

Alzheimer Scotland, in its response to the Welfare Reform Committee, noted that the majority of people living with dementia are women, as are the majority of carers of people with dementia. Accordingly, the decisions taken in relation to the future of social security in Scotland will have a disproportionate impact on women across Scotland. Of the elements of social security which will be devolved, the following are those which will have the greatest impact on people with dementia and their carers; broken down by percentage, women account for:

51% of Disability Living Allowance claims.

54% of Personal Independence Payment claims.

65% of Attendance Allowance claims.

69% of Carer’s Allowance claims. In addition, Alzheimer Scotland is particularly aware that as a result of generational differences in working practices, many older women are not entitled to a full state pension, having not earned enough throughout their working lives to reach the contribution thresholds for full state pension or contribute to an occupational/personal pension. This can leave many older women at a significant economic disadvantage, invariably impacting on their ability to stay active and involved in their local communities.

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As part of the Scottish Government’s EQIA and through its development and implementation of the new social security system, it is crucial that this imbalance is addressed. This represents a significant opportunity to improve women’s experiences across a number of areas including employment, social and child care and anti-poverty strategies, all underpinned by a human rights-based approach in legislation, policies and services. Independent advice and scrutiny Alzheimer Scotland believes that there needs to be an independent body/committee established within statute with responsibility for scrutinising the social security system in Scotland. It is essential that the body is enshrined in stature to ensure a clear line of accountability and responsibility. Furthermore, we believe that statute (whether primary or secondary) must set out the operation of the body, with the remit and scope clearly defined, with clear lines of reporting. One possible way forward would be to have the reports of the body laid before parliament, with a specific role for the Welfare Reform Committee to consider the reports in detail and question members of the panel –in a similar manner to that of the Auditor General and the Public Audit Committee. We suggest that the advice and scrutiny functions explained within the consultation document could be delivered by a single body of experts. In addition, Alzheimer Scotland believes that regardless of the make-up of the scrutiny and/or advisory body, there must be a formal statutory requirement for it, in addition to involving civic society groups and public consultation, to meaningfully involve and engage with the Social Security Citizen Panels (‘User Panels’) to ensure that the views of people with experience of the system are central in driving improvements. We further propose that this relationship is clearly explained as part of the Social Security Charter.

The Devolved Benefits Disability Benefits Alzheimer Scotland intends to address the proposals and our concerns around Personal Independence Payment, Disability Living Allowance and Attendance Allowance together. Where appropriate, we will identify specific problems with benefits individually. Application Process As noted above, the current social security system does not encourage or support people to access the support for which they are eligible. People with dementia and their carers have described the process of applying for benefits as stressful and prohibitively complex, both in relation to the time and effort they require; part of this is as a result of the length of the documents and the lack of clarity around the information that they expect of the person completing it. Both carers and people with dementia have indicated that:

Whilst they were aware of the names of different benefits, they were unsure what they were for or if they could claim them.

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They have found it very difficult to find accessible information and advice about the range of benefits and other sources of financial support available and to them.

When they had identified that they may be entitled to benefit(s), it was difficult to find the correct person to contact regarding this.

The provision of information and advice about welfare benefits varies across Scotland with many people not knowing where to access advice and support regarding potential eligibility.

Many of them experienced a considerable delay between their initial claim and the commencement date of the benefit coming into effect; the process as a whole takes too long.

The process of applying for support requires considerable levels of form filling (much of which is duplicative and overlapping), at different sites, often with limited or no support through the process. This results in a process which is repetitive, time intensive and potentially distressing for the person with dementia and their carers, particularly where issues of a personal nature must be discussed. In addition, in instances where applications have been fully or partially moved online, people with dementia and their carers have told us that this can present a barrier to them applying as some lack confidence, access or ability to complete the process online. Similarly, the necessity of phoning to begin a Personal Independence Payment (PIP) claim can be difficult; these processes are seen as ‘faceless’, not providing the reassurance and support people may need for an unfamiliar and complex process. This is especially true in instances where a person with dementia has communication difficulties and may not be able to provide the information required. Despite this, we are aware that it is common for carers or family to be told that, if they are not recognised as an appointee, the person with dementia must speak on the phone. In this instance, it would therefore be useful for an alternative hard-copy application to be made available. Alzheimer Scotland therefore believes that every person applying for support through the social security system should be able to do so in a way which is most appropriate for them, with support provided through the entirety of the process, from application to appeal from an independent advocate who can support the person to complete information and advise on the process of at each stage. As noted earlier in the consultation, we believe this would be most effective if provided through a ‘one stop shop’ service, similar to the Glasgow Long Term Conditions Financial Inclusion Partnership. Assessment/Eligibility/Evidence Alzheimer Scotland strongly believes that there is a need for greater recognition and accommodation within the welfare system about the nature of dementia as a progressive neurological condition. Specifically, evidence of a medical diagnosis of dementia should be accepted without the need for repeated assessment, which can place undue stress on the person with dementia and their carer.

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Alzheimer Scotland believes there are a number of considerations the Scottish Government must take when in relation to the assessment process which accompanies both Personal Independence Payment (PIP) and Attendance Allowance. We believe that the requirements for regular face-to-face assessments are inappropriate for a person with dementia and do not provide an accurate picture of the level of support to which the person requires. We believe the process should be revised as:

The requirement to travel to assessment centres can be difficult for people with dementia, particularly for those in rural areas for whom travelling may be difficult.

Being in an unfamiliar environment and speaking with assessors whom they do not know and who may not have a sufficient understanding of dementia, has the potential to be distressing for a person with dementia, particularly where questions are of a sensitive and personal nature.

Dementia is an illness which continues to be surrounded by stigma and negative perceptions. As a result it is common for people with a diagnosis of dementia to try to hide their symptoms and to refuse to acknowledge or discuss their diagnosis. As a result, the assessment may not accurately assess the person’s needs: the person may not have insight into their condition or, in response to the personal nature of the questions asked in these assessments, may hide the extent to which they need support. Similarly, we are aware of instances of ‘follow-up’ phone calls where the person with dementia denies that they need support, despite carer and professional statements to the contrary.

Whilst Alzheimer Scotland understands the need for the assessment process, the questions asked during the face to face interview (as with those in the application process) can be extremely upsetting and distressing. Additionally, we recognise that whilst it is difficult to move away from a deficit model of assessment, the questions could be reformulated to focus on what support would help people to keep living in their own homes. Alzheimer Scotland is clear that the responsibility for collecting evidence for a person’s claim should rest with the social security system, not on the individual. If the Scottish Government proceeds with its intention to remove reassessment processes from disability benefits for progressive conditions, it should be considered that that proof of a medical diagnosis for a progressive and degenerative condition, such as dementia, may be sufficient. If no exemption is brought in, it is essential that the ‘best available evidence’ approach is taken. This approach would focus on gathering the best evidence from the person or people best placed to provide relevant information on the person’s needs. In many cases, evidence gained from a medical assessment or interview with the person with dementia will not be the best way to establish the facts, as it only provides a snapshot of the person on the day. We believe that evidence from a range of sources including those who know the person best, such as the person’s family, carers or health and social care professionals, would be a more effective approach. This could include services such as daycare and groups which the person regularly attends and specifically for people with dementia, could include a PDS Link Worker. Alzheimer Scotland is aware of one example for Personal Independence Payment where an assessor contacted our services, with the knowledge and consent of the person

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with dementia, to clarify details of the person’s needs and to gather information, thus avoiding a delay in the progress of the claim. Alzheimer Scotland would reiterate that for face-to-face assessments and assessments of claims, the member of staff undertaking these tasks must have an appropriate level of knowledge or awareness of dementia, with interviews taking place in a format and setting suitable for the person with dementia. In addition, it is difficult to understand the rationale behind the administration Personal Independence Payments which, when a person is over-65, allows for a re-assessment of the daily living component but does not allow for a person to claim for the mobility component, even where despite the cause of the increased need for support for daily living also likely to impact on the mobility of the individual. This should be reviewed as part of the devolution of this benefit. Proposed Changes to the Delivery of Disability Benefits Alzheimer Scotland is broadly supportive of the proposals to change the delivery of the disability benefits, though further detail of how this is envisaged in practice is required. In relation to alternatives to cash payments, Alzheimer Scotland agrees with the principle of providing support in a way which is most useful for a person and in a way which best meets their needs. Similarly, the choice and control this would offer an individual is wholly consistent with a rights-based approach. Whilst it is welcome that this has been stressed as a voluntary option, we are concerned about institutional bias influencing people’s decisions. We are aware of this an issue within self-directed support whereby people have a statutory right to manage their support in one of four ways, however, this is not being realised in practice. Indeed, we are aware that in some cases, people are not being given the choice and have simply been assigned or encouraged to take a specific option. Therefore the Scottish Government must set out how it plans to ensure that people are supported to make an informed choice without undue influence; we suggest this is where independent advice and support would be of particular value. We are also concerned about the possible inequity of financial benefit which may arise through the provision of benefits through different means. The Scottish Government must give consideration and provide explanation of how a person receiving a preferential energy tariff (or other non-cash payment), will not benefit or be materially worse of for having chosen this option, or vice versa. Furthermore, we have concerns about the complexity of offering such alternatives to cash payments where the provision should be covered by other sources of support. For example, it is proposed that equipment for home adaptations could be offered as the result of the reduced cost from the Scottish Government’s purchasing power. Whilst not against this in principle, Alzheimer Scotland is concerned that such an overlap with what may otherwise be provided by health or social care, including through obligations under the Chronically Sick and Disabled Person Act 1970 or other statutory obligations, could lead to cost-shunting to the individual’s benefits. This could exacerbate the inequity of provision of support across

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Scotland whereby everyone would be eligible for this support as part of their disability benefit, but some would receive this kind of support from the local authority, subject to local authority eligibility criteria. As above, this potential inequity of provision must be addressed if such an option is to be implemented. Alzheimer Scotland also supports the principle of no reassessment for chronic and progressive conditions, which would include dementia. On the face of this proposal, this would ease the stress and worry of many people for whom the current system does not treat with dignity or respect. However, we have two main concerns with this proposal. For benefits which are paid at a different rates level, such as Personal Independence Payment or Attendance Allowance, the Scottish Government must set out how this will work in practice for progressive conditions such as dementia, where by a person’s needs will increase over time. In addition, we recognise and welcome that this proposal is a well-intentioned approach to simplifying the process for people claiming support and avoid unnecessary stress and burden. Whilst the proposal has merit per se, it does not address the underlying issues which necessitate it; namely, people distrust and fear the current system, resulting in them actively disengaging. Related to this, Alzheimer Scotland would welcome further detail on the how this may affect payments related to a person who is at the end of life. At present, a specific form (DS1500) must be completed by a GP, consultant, hospital doctor or specialist nurse, enabling a person who is terminally ill to claim a relevant disability benefit under ‘special rules’. However, we are aware from our experience that carers or proxy decision makers are not always aware of this form. On this point, there are three similar types of support which are available to people who are considered terminally ill and to people who care for them:

‘Special rules’ as they apply to disability benefits.

Provisions for exemption for non-residential care charging.

Adult carer support plans, under the Carers (Scotland) Act 2016. These are all ‘triggered’ by the person being identified as being terminally ill (usually defined as having less than six months to live). However, applying for one does not necessarily trigger the others and in many cases, a person applying for one of these forms of support will not be aware or made aware of their eligibility to the other supports. As noted elsewhere in this response, the devolution of these benefits represents an opportunity to resolve such issues to ensure that such disconnects between health, social care and social security are reduced. Related to this, we believe that this is potentially one instance where a lump-sum payment may be helpful for individuals and therefore support this in principle. However, for circumstances where a person has advanced dementia, the clinical assessment of end of life is difficult and imprecise. To predicate the DS1500 and a lump-sum payment has the potential to result in disparity in payments being made. One caveat we would make in relation to this proposal is that the SSSA should not seek to reclaim overpayment related to

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lump-sums. For example, if the SSSA authorised a lump-sum payment for 3 months on the basis of a clinical assessment of a person being at end of life and the person dies sooner than this, we believe the SSSA should not seek to reclaim this money; doing so would has the potential to cause additional stress and burden upon a person at a particularly difficult time and is not in keeping with the new principles of the new system. Similarly, we believe that if a person lives longer than this period of time, it should not preclude another lump-sum if it continues to be the opinion of a relevant clinician that the person is at the end of life. Furthermore, the Scottish Government must ensure that the new SSSA works with HMRC to ensure that a lump sum payment would not negatively affect a person financially where their income may be affected by the increased income. Carer’s Allowance Alzheimer Scotland welcomes the Scottish Government’s intention to increase the rate of Carer’s Allowance in Scotland. However, the Scottish Government proposals with regard to this benefit have not addressed a number of the concerns we raised as part of our response to the Welfare Reform Committee. Whilst some of the issues below are referenced within the consultation response, many of them are included as part of “proposals for the longer term”. These issues are key areas of concern which carers have raised with us on a number of occasions. They should therefore not be seen as ‘long term’ issues to be addressed at another time. Alzheimer Scotland has established and continuing concerns with the status and delivery of Carer’s Allowance, grouped within “earnings replacement benefits” intended to provide financial support for people who have given up work or reduced their hours of work to care for another person. Even with the proposed increase, this amount cannot reasonably be considered as a meaningful replacement of earnings for a carer who is providing “regular and substantial care” (defined in statute as 35+ hours per week); especially where the carer has had to give up employment to care for someone else. The Scottish Government must therefore consider in what regard they wish Carer’s Allowance to be held as part of the social security system. If it is to continue as an “earnings replacement benefit” as is currently the case, Alzheimer Scotland believes that the benefit should be commensurate with the “regular and substantial” criterion and recognise the contribution that informal caring makes within Scotland. If this is not deemed financially viable, the inherent problems must be addressed, including:

The weekly earnings limit of £110 – a person cannot be “gainfully employed”, restricting their ability and choice to work, supplement their income and take the opportunities for social inclusion which employment affords.

The lack of an income taper – a person may have an income of £109 per week and be entitled to full Carer’s Allowance, whilst a person with an income of £111 is not entitled to any amount of Carer’s Allowance despite there being no significant difference in income.

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A carer may not be in “full time education” – the Scottish Government has identified carer employment and education as a key issue, but only within its medium-long term goals. We believe this should be a higher priority for the Scottish Government as carers this issue affects carers long after their caring responsibilities have ended.

Underlying Entitlement/Overlapping rules – This rule prevents Carer’s Allowance from being paid if the person is in receipt of another “earnings replacement benefit” e.g. state pension. In such cases, the claimant has an “underlying entitlement” to Carer’s Allowance but cannot be paid any amount of the benefit which is overlapped by another earnings replacement benefit. Overlapping benefit rules affect about 42% of claimants. However, they must still make the claim in order to claim for Carer’s Premium on their pension.

This latter point, and more generally the complexity of eligibility for Carer’s Allowance and its relationship to Income Support, is the source of much confusion, stress and anxiety for many carers, who have told us that they want to see a streamlined and simplified process which is easier to understand and apply for. Alzheimer Scotland believes the new social security system must recognise and respect the individuality, distinct identity and needs of each person. However, at present, eligibility for Carer’s Allowance is dependent on the cared-for person being in receipt of a “qualifying benefit” linking the two benefits together; in cases where the cared-for person may not be eligible or may choose not to claim a qualifying benefit, the carer is left without monetary support, even if they otherwise meet the eligibility criteria for Carer’s Allowance. It is our view that the rules relating to the severe disability premium or severe disability addition, paid as part of certain means tested benefits, are unfair. A cared-for person is not entitled to this additional payment for severe disability where a carer is paid any amount of Carer’s Allowance in respect of the claimant. This links the cared for person and carer financially and means that they are not considered as individuals in their own right. The carer would need the permission of the cared-for person to claim Carer’s Allowance, which the person may be reluctant to accept, knowing that they will likely lose the severe disability premium or addition. Definition of a Carer There must be consideration given to the definition of carers in relation to eligibility for support from the social security system. As set out in Section 16 Paragraph 4(a) of the Scotland Bill 2015:

“Carer’s benefit” means a benefit which is normally payable in respect of the regular and substantial provision of care by a relevant carer to a disabled person; and for this purpose— (a) “relevant carer” means a person who—

(i) is 16 or over, (ii) is not in full-time education, and (iii) is not gainfully employed;

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This is inconsistent with the definition as set out in the Carers (Scotland) Act 2016, and is the source of other restrictions on financial support, including exemption/discounts on council tax. We believe that the definition of carer must be amended to create consistency across all legislation and policy, with eligibility criteria for benefits set out separately. Doing so represents an opportunity to tie systems together with forthcoming ‘adult carer support plans’ (ACSP) considering a caregivers needs and desired outcomes, linked to different sources of support, including Carer’s Allowance or Self-Directed Support. When applying for an ACSP, a person should be provided with information about Carer’s Allowance and vice versa. Whilst, we believe that the delivery of Carer’s Allowance should be the responsibility of the SSSA, there must not be a disconnect between the benefit and ACSP. We would argue that the two systems should ensure that the person is, at the very least, aware that they may eligible to support from the other. Winter Fuel & Cold Weather Payments Alzheimer Scotland believes these benefits should continue in their current form. However, it is essential that, if the Scottish Government decides to proceed with preferential energy tariffs in lieu of cash payments for disability benefits, that this does not affect eligibility for Winter Fuel or Cold Weather Payments. We believe that these benefits, along with Funeral Payments, should continue to be regulated benefits with nationally defined criteria, not discretionary benefits. Funeral Payments Alzheimer Scotland believes that local authorities would be best placed to deliver this benefit, with eligibility criteria set nationally by the Scottish Government. As many local authorities operate and maintain crematoria and burial grounds in Scotland, we believe it therefore makes sense for such a benefit to be administered and delivered at the local level. As noted elsewhere in this consultation, there is a need to streamline and simplify the process of applying for and delivering supports. Alzheimer Scotland therefore proposes that the budget for Funeral Payments could be subsumed within the existing Scottish Welfare Fund, with the eligibility criteria for set at a national level to ensure consistency across Scotland and inserted in the existing guidance for the Fund. The Scottish Government’s reference to the DS1500 as a method of raising awareness of the option for receiving support has merit, however, this would only reach people applying for benefits for the first time and would not reach people already in receipt of benefits. Discretionary Housing Payments Alzheimer Scotland believes the Scottish Government should give consideration to extending the eligibility of discretionary housing payments to carers, where the cared for person moves into institutional care. Under such circumstances, social security payments

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are stopped after four weeks if the person is in hospital and may be affected if the person moves into a care home, depending on the cared for person’s financial circumstances. Carers of people with dementia have shared with us that these transition periods are emotional, stressful and challenging, often placing people in a difficult financial position. It would be preferable for the Scottish Government to reform social security so that in such circumstances, these benefits continue for a longer period, especially carers benefit. If the Scottish Government is not minded to revise these timescales, other means of support must be available for carers, including discretionary housing payments. This should be looked at in relation to the implementation of the Carers Act (Scotland) 2016 and Adult Care and Support Plans. As carers have also shared that where the cared for person moving into an institutional role, the caring responsibilities do not end at that point. Many will continue be responsible for their affairs and will still support the person in some form. Even where this may not be the case, we have already demonstrated within this consultation, an immediate return to employment may neither be desirable or possible, leaving the carer with their own transition period during which they should not face a cliff-edge in support. We believe the social security system must provide greater support to carers to support their transition, working closely with partner organisations. Universal Credit flexibilities and housing element Alzheimer Scotland supports the proposals within this section as we believe the choice and control this will afford individuals is consistent with a rights-based approach. Specifically, we recommend that payments should by default be made to the individual, with the option of switching to household payments. For carers and proxy decision makers who have responsible for the financial matters of a looked after person, the process for switching benefits must be balanced insofar as it must be robust and ensure that the proxy has relevant authority to do so, whilst not being so onerous as to create additional burden. Additionally, Alzheimer Scotland stresses the need for all there to be clearer links within structures to ensure that the full range of supports for which people are eligible are provided and promoted in a more coordinated way. For example, at present, many carers and people with dementia may be in receipt of some level of housing benefit, yet may not be informed that they are eligible for council tax reduction.

Operational Policy Much of this response has dealt with specific areas of operational policy and will not be duplicated here. However, we have some specific comments in relation to matters under the following headings.

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Residency and cross-border issues Alzheimer Scotland broadly agrees with the approach proposed in relation to habitual residence as the starting point for cross border issues. Alzheimer Scotland believes there would be value in establishing a consistency of approach and establishment through a parallel process with that of the provisions around cross-border placements for health and social care. The arrangements for this are complex, often placing a considerable degree of stress and anxiety on carers and family members, as the process is often confusing and uncertain, particularly where there is a dispute between local authorities. If another layer of complexity and process, with different approaches is established for cross-border social security issues, it is likely to add to result in unnecessary stress and complexity for carers. Managing overpayments and debt Alzheimer Scotland believes that where overpayments have been made in error on behalf of the person, there must be a reasonable process in place to recover this money which does not stigmatise or automatically resort to punitive measures. As noted elsewhere in the consultation, there are specific issues around transition periods where a person’s residence changes from home to an institutional setting. We believe the system, if it is to truly treat people with dignity and respect, should look to build in flexibility which would avoid punitive measures as the first measure of resort, allowing for understanding and accommodation of such circumstances. It is imperative that, if the Scottish Government is minded to introduce lump sum payments, it is set out how it intends to manage overpayments in this area, especially where payments are made in relation to a person at the end of life. Conclusion Alzheimer Scotland broadly welcomes the Scottish Government’s proposals and especially the commitment to reducing stigma associated with social security. However, there are numerous issues outstanding with the forthcoming devolution of the social security powers. We are committed to ensuring that the voices of people with dementia, their families and carers are heard and help shape policy and practice. Alzheimer Scotland would therefore welcome the opportunity to work with the Scottish Government to ensure that people with dementia, their families and carers are meaningfully involved throughout the development and implementation of the new social security system. Owen Miller Policy Officer, Alzheimer Scotland 28 October 2016