Response 861467693

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Information About You

What is your name?

Name
Bill Scott

Are you responding as an individual or an organisation?

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Individual
Ticked Organisation

What is your organisation?

Organisation
Inclusion Scotland

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Fixing the principles in legislation

Which way do you think principles should be embedded in the legislation?

Please select one item
A. As a 'Claimant Charter'?
Ticked B. Placing principles in legislation?
C. Some other way
If other, please specify
We consulted widely with disabled people and they had a distinct preference for the principles being embedded in legislation rather that a Charter. Although there was some support for a Charter it was outweighed by people who had been unable to resolve issues via previous UK Government Charters. It was also thought that legislation had more weight and could be relied on more if complaints were being made. To enshrine the principles in enforceable legislation would demonstrate how seriously the Scottish Government takes this. However, it would presumably be necessary to find ways of drafting legislation so that there is sufficient clarity about the precise meaning of the principles and how they are to be operationalised in practice, so that consistency in implementing the law can be demonstrated and transgressions can be confidently contested. It might also mitigate potential confusion if there is consistency in the legislative approach taken here and in other instances where such principles have been embedded in legislation. It should further be noted that including the principles in legislation does not preclude the provision of more detailed, accessible information in multiple formats, to explain what the legislation means in practice.

Should the charter be drafted by:

Please select one item
An advisory group?
Ticked A wider group of potential user and other groups or organisations?
Both
Some other way
If other, please specify
Although Inclusion Scotland is in favour of the principles being embedded in legislation we believe that if a Charter is to be adopted it should be co-produced and involve disabled people as users of the benefits the Charter covers. Moreover, it is not evident why such an approach could not also be taken in relation to the development of legislation and of accessible explanatory information.

On whom would you place a duty to abide by the principle that claimants should be treated with dignity and respect?

Please select one item
The Scottish Government
Ticked The Scottish Ministers
The Chief Executive of the Social Security Agency
Someone else
If someone else, please specify
We are not sure why this is seen as an either or situation. Surely the principle that claimants should be treated with dignity and respect should apply to all those involved in devising and delivering the new Scottish Social Security system. That would include the Scottish Government and its Ministers as well as the staff and CEO of the new Social Security Agency.

Do you have any further comments on placing principles in legislation?

further comments on placing principles in legislation
The Scottish Government and Parliament are currently bound to adhere to the rights contained in the European Convention on Human Rights when framing and enacting legislation. These rights provide for everyone to be treated with dignity and respect. They are further strengthened by the European Union's Charter of Fundamental Rights and enshrined in UK legislation by the Human Rights Act. However the referendum on the UK's membership of the European Union and the UK Government's intention to invoke Article 50 may mean that the Charter of Fundamental Rights will not be a reliable protection in future years. The UK Government has also notified its intention to seek exemption from being bound by decisions of the European Court of Human Rights and of repealing the Human Rights Act. Therefore these too may not be reliable sources of protection for the rights of disabled people using the Scottish Social Security system in future. Thus enshrining the principles in legislation will be the only sure way of guaranteeing such rights to users of the devolved Social Security system.We also believe that the social security system as a whole should take a rights based approach to dealing with people thus it’s appropriate that the central principles underpinning should also be framed as rights; something that can only be done by enshrining them in legislation.

Outcomes and the User Experience

Are the outcomes the right high level outcomes to develop and measure social security in Scotland?

Please select one item
Ticked Yes
No
Please explain why.
In general these are all worthy short, medium and long term outcomes to aim for. Inclusion Scotland ran 4 engagement events (Edinburgh, Greenock, Dundee and Oban) in partnership with Social Security Division of Scottish Government. These were attended by approximately 150 disabled people and representatives of disabled people's organisations (DPOs), support, advocacy and advice agencies. They told us clearly that disabled people were not treated with dignity and respect within the current social security system. To provide just two quotes "I was treated horribly as though they thought that I was a liar", and "They make you feel small" Virtually all of those participating in our events said that they needed and highly valued support and assistance in completing application forms; advocacy in dealings with the DWP and at assessments and advice assistance in completing forms and in reviews and appeals. We could continue at great length but in general there was considerable support for the outcomes outlined above because the current system was failing to deliver on so many of them.

Are there any other outcomes that you think we should also include (and if so, why)?

ny other outcomes that you think we should also include
Yes: 1) Short/Medium and Long Term Outcome: That the poverty and inequalities experienced by disabled people are reduced. We note that Scottish Government have set an outcome that - "Scottish Benefits continue to target the right people and are impacting on poverty and inequality". Inclusion Scotland have concerns over the concept of "targeting" which is entirely misplaced in relation to disability benefits which should be paid to all of those who meet the entitlement criteria. In any case research by the Institute for Social and Economic Research ("Disability and care needs in the older population", ISER, 2015) shows that, certainly for older disabled people, disability benefits are very well targeted with those on the lowest incomes and higher levels of impairment much more likely to be in receipt of AA or DLA. Secondly we think that the goal to merely have an "impact" on "poverty and inequality" is timid and lacking in ambition. Currently disabled people experience enormous inequalities. Young disabled people are more than twice as likely to leave school with no qualifications as their non-disabled peers; at age 16 they are twice as likely as other school leavers to be Not in Education, Training or Employment but more than 3 times as likely to be NETE by age 19; less than half of Scots disabled people of working age are in employment (44%) and according to the New Policy Institute's latest research (Disability and poverty: Why disability must be at the centre of poverty reduction, Aug 2016) fully 28% of all those living in poverty are disabled people and a further 20% live in a household containing a disabled person (this is after disability benefits, which are paid to meet the additional costs of disability, are stripped out of the equation). If nearly half of all those living in poverty are disabled people and their families then if the Scottish Government's ambition to reduce child poverty by 2013 is to be realised then they must tackle the poverty experienced by disabled people or they will fail. Therefore a target for poverty reduction should form part of the outcomes of the Scottish Social Security system. 2) Short/Medium and Long Term Outcome: Short/Medium and Long Term Outcome: Disability benefits continue to be paid to meet the additional costs arising from disability. Why? The additional costs of disability are well known and well documented. The disability charity Scope’s Extra Costs Commission estimated in 2014 that disabled people spend on average an additional £550 per month on costs arising from disability. Therefore there should be an Outcome that aspires to continuing to meet these costs. 3) Medium/Long Term Outcome: Disability benefits assist disabled people in achieving independent living. Why? Disabled people are very concerned that disability benefits should remain a personal cash entitlement that assists them in being involved in all aspects of social and community life. 4) Short term Outcome: Those using the Scottish Social Security system as claimants should be involved in monitoring the planning, implementation and delivery of the new system. Why? The Christie Commission recommended that those using services had to be involved in the reform of public services for those services to succeed in the future. The creation of a new Scottish Social Security system provides an ideal opportunity for putting that aspiration into practice. 5) Short/Medium/Long term Outcome: Those with lived experience of claiming Scottish benefits should be directly involved in advising Scottish Ministers (for example in reviewing the Social Security legislation/system's performance and it's future development). Why? See (3) above. However if there is also a Disability benefits Commission being created then disabled people should and must be members of it as service users. Only those using a service have the lived experience to know what does, and does not, work for them. 6) Short to Medium term Outcome: That the inaccuracies, errors and delays in benefit payments that are endemic in the current UK Social Security system should be addressed and substantially reduced . Reducing error will also save public money allowing it to be used to improve the amount of benefits in payment. All of the above and the Scottish Government’s own proposed outcomes require a framework of robust targets and indicators to be developed so that progress can be measured and failures addressed.

How can the Scottish social security system ensure all social security communications are designed with dignity and respect at their core?

Scottish social security system ensure all social security communications are designed with dignity and respect at their core
"The tone of the (DWP's) correspondence needs to be more respectful. It is very demeaning". This is a quote from a disabled person who attended one of our engagement events. Nearly all of those who commented on the language used in DWP communications found it over-complex, vague and confusing. They also invariably found it demeaning and disrespectful. The best way of ensuring that communications from the new social security agency etc. are designed with dignity and respect is to involve the end-users of those communications in their design and wording. Inclusion Scotland were amongst those organisations arguing for future social security communications to be clear, accessible and written in plain English. and also that they be available in a variety of formats (e.g. BSL, Easy Read, Paper and Digital) to assist those with sensory or communication impairments. Whilst digital communications can benefit those with access issues they can also be a barrier to many disabled people. A very large proportion of disabled people do not have digital access and many are unlikely to be able to use it even if they had it available. This is due to a variety of inter-connected reasons including learning difficulties, poor literacy, sensory impairments and poverty. That is why it is essential that those with insight into these barriers are involved in the design of the new social security system's communications.

With whom should the Scottish Government consult, in order to ensure that the use of language for social security in Scotland is accessible and appropriate?

With whom should the Scottish Government consult, in order to ensure that the use of language for social security in Scotland is accessible and appropriate?
Disabled people, carers and other service users should be not only consulted but directly involved in co-producing communication materials and methods, so as to ensuring that the language and the methods of communication used are accessible and respectful. It is the users of the system that are best placed to give advice on what does, and does not, work for them. It would also be useful for Scottish Government to consult with Advocacy Agencies working with disabled people - especially those with learning difficulties, cognitive impairments (such as autism or brain injury) and mental health issues to ensure that they too are enable to have a voice in the process of ensuring that communications are accessible and appropriate. In addition other equalities groups need to be consulted to ensure that issues of intersectionality are addressed e.g. BME disabled people, LGBTQI disabled people, etc can be particularly seldom heard groups.

Are there any particular words or phrases that should not be used when delivering social security in Scotland?

Please select one item
Ticked Yes
No
If yes, please state which words or phrases should not be used.
Yes -– “the disabled” (we are not a homogenous group), also describing people as their impairment ("an epilectic", "an arthritic", etc.), "fraudsters", "strivers and skivers", "decent working families", "benefit dependency" and "tax-payers" are amongst the words and phrases that should be avoided. There are a number of other disability language issues (such as “confined to a wheelchair”), that should be avoided but space does not permit us to go into all of them. All of them create a stigma for those claiming benefits by creating an artificial divide between benefit claimants and the rest of society. In fact, many benefit recipients are also part of "working families" and everyone, apart from the giant multi-nationals such as Amazon, are also "tax-payers" (e.g. VAT ).

What else could be done to enhance the user experience:

When people first get in touch?
Disabled people at our engagement events told us that the most important thing about communications with the new agency is that they should be enabled to contact the social security agency via a variety of methods. This is because communication barriers impact differently on different impairment groups and these barriers can be removed by different communication methods result in different barriers which have to be overcome. For example, many learning disabled people would find it extremely difficult if not impossible to make contact via the internet. Similarly, many people with sensory impairments would need additional support to be enabled to phone the new social security agency. Disabled people's experience with DWP call centres is fairly uniformly awful. Disabled people complained of waiting long periods for an answer; of being told they were being put through to the "right person" and instead the phone going dead and of being passed around on the phone to several DWP staff but never getting to speak to someone who actually knew anything about their claim. One rights worker reported to us that in the space of a week he spent over one and a half hours on hold on the phone just waiting for 4 telephone calls relating to disability benefits to be connected to a DWP staff member. He points out that this is not only stressful for the disabled people he is dealing with but enormously wasteful of his time and skills and thus the public money that funds his post. This suggests that the call centres are inadequately staffed and that customer service standards are appallingly low. These issues need to be addressed if the Scottish social security system is to be viewed in a better light than its UK counterpart. In addition, disabled people at our engagement events told us that they had very negative experiences of contact with the DWP. They generally found DWP staff unfriendly and unhelpful. They believed that staff in the new social security system should receive training on interacting appropriately dealing with disabled people (e.g. to raise awareness of the barriers that disabled people face) and in "customer" relations.
When they are in the process of applying for a benefit?
See above. Again a variety of accessible means of applying for benefits should be made available. Many disabled people told us that they found that having to make a phone call to obtain a PIP application form a stressful and unnecessary additional step in the application process. Learning disabled people, people with visual and hearing impairments and those on the autistic spectrum found the lengthy phone call to obtain a PIP form particularly stressful. Even when they, advocates or carers told the DWP staff member answering the call that the disabled person who wished to apply for benefits was incapable of making the call themselves they were told that the disabled person had to speak - even when that person could not hear the DWP person on the other end of the line! We recommend that forms for the new Scottish disability benefit(s) are instead made available in post offices and CABs as was the case for DLA application forms. The service should suit the needs of the user and not those providing the service.
When a decision is made (for example, about whether they receive a benefit)?
Decisions should be made available in a variety of accessible formats so that it can be provided to individual disabled people in a format of their choosing. However decisions should always be conveyed (in addition if necessary) in Plain English in a written format. This is to ensure that the information about the decision is available in a format that can be passed to advocacy & support staff and advice agencies. Decision letters need to be simpler, easier to understand and much shorter than they are currently.
When they are in receipt of a benefit?
See above. A variety of accessible formats should be available but all crucial information should be conveyed in writing (this could be electronically if this is the preferred method of, for example, a blind or visually impaired person).

How should the Scottish social security system communicate with service users (For example, text messaging or social media)?

Scottish social security system communicate with service users
Text messaging may be a choice exercised by some disabled people but for many it will not be a format which is accessible (e.g. for those with visual impairments). We are unsure which social media platform the Scottish Government envisages using. Such platforms may be a way of communicating quickly with those who have (for example) Twitter accounts. However impairment is associated with a aging and social media users tend to be drawn from younger age groups and a large proportion of disabled people still do not have internet access (the latest Scottish Household Survey suggests that access and usage of the internet is still below 50% of disabled people) then this will not be an appropriate or accessible method for a very large proportion of those claiming or in receipt of disability benefits.

What are your views on how the Scottish Government can ensure that a Scottish social security system is designed with users using a co-production and co-design approach?

co-production and co-design approach
Co-production is not the same as consultation and generally involves a fairly fixed, fairly small group comprised of multiple stakeholders who with increased familiarity and respect for what each partner brings to the table forge good relationships, trust, etc. over a period of time.The Independent Living in Scotland project (part of Inclusion Scotland) have produced a Co-production Toolkit which might also be of assistance in planning future co-production with disabled people. Inclusion Scotland, People First and the British Deaf Association involved disabled people in co-production work with local authority practitioners delivering the Scottish Welfare Fund to improve communications and enquiries from disabled people. We also worked with People First, disabled people and staff from the Scottish Public Service Ombudsman's Office (SPSO) to ensure that communications and information used by the SPSO were provided in a variety of accessible formats. These two examples of good practice could be built on by staff in Social Security Division and the new Social Security Agency. Inclusion Scotland would be happy to share further information on how these two co-production initiatives were planned and delivered with Scottish Government. They demonstrate that professional staff and disabled people can work together to design more accessible and user friendly services. In addition, Inclusion Scotland would argue that the lived experience of disabled people is not only a desirable source of knowledge to be drawn on by the new social security system but an essential one. It is disabled people as users of the disability benefits system who are best placed to comment on what does and does not work for them. Scottish Government needs to think through when, how and what to co-produce with whom. We believe that they should be brought around the table to work with civil servants, new Social Security Agency staff and other decision makers so that they can not only be consulted with about the new social security system but participate as decision-makers in the design and implementation process.

We are considering whether or not to adopt the name, "User Panels". Can you think of another name that would better suit the groups of existing social security claimants which we will set up? If so, what other name would you choose?

We are considering whether or not to adopt the name, "User Panels".
We would suggest "Advisory Panels" as they will be offering advice based on their experience.

Delivering social security in Scotland

Should the social security agency administer all social security benefits in Scotland?

Please select one item
Ticked Yes
No
Please explain your answer.
It should administer all nationally delivered benefits. There may be some benefits which are more appropriately administered and delivered at a local level (for example funeral grants). We would agree with CPAG that is essential that core functions such as the processing of claims, decision making and payments are performed exclusively by the proposed Scottish Social Security Agency (SSSA). There are advantages in having devolved benefits delivered by a single national agency : • It promotes fairness by improving the consistency and uniformity of decision making on entitlement to benefits. • It enables consistent training of staff and for the setting of minimum standards of delivery, leading to fairer outcomes for claimants. • It will result in a simpler and easier system for disabled people to understand and use. • It will reduce administrative costs and communication problems developing between different agencies if several (such as local authorities) were to be involved in delivery. For example would new claims need to be submitted if people crossed local authorities' geographical boundaries. • It would encourage the development of specialist expertise whilst also ensuring that tasks, such as developing communications and managing human resources do not have to be duplicated in multiple locations.

Should the social security agency in Scotland be responsible for providing benefits in cash only or offer a choice of goods and cash?

Please select one item
Ticked Yes
No
Please explain your answer.
Cash only. Inclusion Scotland and the disabled people we have engaged with are fundamentally opposed to disability benefits being replaced or part-paid in kind with goods. The existing Motability scheme should continue to be delivered by Motability.

How best can we harness digital services for social security in Scotland?

How best can we harness digital services for social security in Scotland?
Digital services can be advantageous for some impairment groups – for example blind people with the correct software can “read” e-mails and other electronic communications which would otherwise be inaccessible to them. Inclusion Scotland have no difficulty in endorsing the use of digital services to extend and improve accessibility to the social security system. However policy and decision makers have to be aware that a very large proportion of those most likely to make claims to disability benefits have little or no access to the internet – nor can many disabled people’s access be improved through training. The Scottish Government reviewed access to digital participation in 2012. That review found that Internet access and use was higher among those who do not report having a disability or long-standing illness. Only 44% of disabled people personally had access to and used the internet. This compared to 79% internet access and usage amongst those without a disability. There are a variety of reasons for this – some related to income levels amongst disabled people, some related to the average age of disabled people and others which are impairment specific. The last Scottish Household Survey found that internet access and usage was still hovering at 50% or below of disabled people. Some impairment groups, such as learning disabled people, are going to struggle with internet access regardless of the level of training and support that they are offered. Thus digital services should be seen as a useful tool rather than a panacea.

Should social security in Scotland make some provision for face to face contact?

Please select one item
Ticked Yes
No
Please explain your answer.
Some disabled people, particularly some with learning disabilities, certain types of communication and/or cognitive impairments would prefer that face to face contact was an option available to them. On the grounds of individual claimant choice we believe that it should be an option available but recognise that such a service is also likely to be more expensive to deliver.

Who should deliver social security assessments for disability related benefits?

Who should deliver social security assessments for disability related benefits?
We would question the underlying assumption that an assessment is required before the award of a disability benefit. Only 30% of applicants for Disability Living Allowance (DLA) were subjected to face-to-face medical assessments. This meant that approximately 70% of DLA awards of benefit were "paper-based" decisions where the disabled person's own assessment of how their condition or impairment impacted on their lives, plus supporting evidence (from their carers, social workers, GPs, Consultants and/or other health professionals) was accepted as sufficient proof of the limitations imposed by their impairment. Despite this there were very low levels of fraudulent claims associated with DLA (less than 1%). The current situation where over 90% of Personal Independence Payment applicants are subjected to a face-to-face assessment is not only extremely stressful for disabled people and their families but unnecessary and expensive. We, and disabled people generally, believe that no one else (including GPs, other health professionals and OTs) knows the “life-impacts” (in terms of the environmental, economic and attitudinal barriers in society) that a person with a condition or impairment experiences better than the disabled person themselves. The disabled people at our events believed that the DLA system of "self-assessment", with accompanying supportive evidence, worked relatively well and think that a similar system should be introduced for the new Scottish disability benefit(s). For the remainder of disabled people that might need to be assessed the overwhelming view was that qualified and experienced health professionals from the NHS, and not private companies , should be utilised to carry out assessments. Disabled people were adamant that only health professionals with knowledge and expertise in the conditions or impairments being assessed should carry out assessments - e.g. there should no longer be situations such as where midwives carry out assessments on people with mental health issues or physiotherapists assess people with learning difficulties .

Should we, as much as possible, aim to deliver social security through already available public sector services and organisations?

Please select one item
Yes
Ticked No
Please explain your answer.
The great majority of disabled people that we have engaged with (both in recent events and over the previous 2 years) were opposed to benefits being delivered by local authorities. Their experience of local authority services had not been a positive one and many feared the creation of a postcode lottery of decision-making and entitlement. Nor could we as an organisation envisage disability benefits being delivered via the health service. This is because it would not be in line with the NHS' core purpose and has the potential to have a damaging impact on the "doctor patient" relationship - e.g. if GPs themselves made decisions on disabled people's entitlement to benefits and refused a claim from a disabled person this would be likely to cause resentment and potentially result in the disabled person not seeking healthcare when they needed it. Moreover diverting midwives and other health professionals away from their normal work into administering benefits payments would be a waste of their skills and training and place unrealistic demands on NHS resources.

Should any aspect of social security be delivered by others such as the 3rd sector, not for profit organisations, social enterprises or the private sector?

Please select one item
Yes
Ticked No
If yes, which aspects?
The disabled people we engaged with were universally opposed to the involvement of the private sector in the delivery of social security. We cannot envisage the involvement of Third Sector or Not For Profit organisations in the delivery of social security as none that we are aware of have the capacity, expertise or remit to provide such a service. Disabled people are already deeply concerned that very private details of their lives have to be shared with public sector workers in DWP. That concern exists even those those workers are bound by a duty of complete confidentiality. Those fears would be hugely exacerbated if a Third Sector organisation was given access to the very private information provided in disability benefit claim forms.

Equality and low income

How can the Scottish Government improve its partial EqIA as to produce a full EqIA to support the Bill?

How can the Scottish Government improve its partial EqIA as to produce a full EqIA to support the Bill?
Engage with the key organisations representing different Equalities groups. They are best placed to recognise what the equality implications of various policy and service developments are. This would include: For women - Engender, Women's Aid and One Parents Families Scotland For LGBTI people - the Equality Network, Stonewall, LGBT Youth Scotland For Care Leavers - Who Cares Scotland For Older People - Scottish Old Age Pensioners Association and Scottish Pensioners Forum Young People - Scottish Youth Parliament For BME people - BEMIS and CEMVO For Disabled People - Inclusion Scotland, GDA, GCIL, LCIL and SDEF. This list is illustrative rather than exhaustive. Similarly to ensure that the implications for those on low incomes are taken into account then organisations representing those in poverty and low income need to be consulted - such as the Poverty Alliance, Poverty Truth Commission and CPAG. However there is also considerable overlap between several equalities groups and those on low incomes i.e. the New Policy Institute estimates that 48% of all those living in poverty are either disabled people or living in households containing a disabled person. For example because of current or past caring responsibilities, women are much more likely to be living in poverty than men. Therefore the representative Equalities groups should also be consulted on changes likely to affect those on low incomes. Inclusion Scotland would also suggest that Scottish Government extends the EqIA process to also assess the impact on human rights – this would help to provide some substance to the commitments on human rights given in the Consultation document. Unfortunately we do not have the time to go into great detail in answering this question but many of the subsidiary questions have a similar answer - the Scottish Government and the new Agency should involve those using the social security system, and the key Equalities organisations representing them, to ensure that the legislation's vision and principles, regulations, policies and implementation help deliver greater equality.

Independent advice and scrutiny

Do you think that there is a need for an independent body to be set up to scrutinise Scottish social security arrangements?

Please select one item
Ticked Yes
No
Please explain your answer.
Given that Section 33 of the Scotland Act effectively prevents the UK Social Security Advisory Committee (SSAC) from providing such scrutiny and advice to Scottish Ministers, Inclusion Scotland believes that the establishment of a similar body in Scotland is a necessity. This is especially the case given that the Scottish Parliament lacks a secondary reviewing chamber for legislation.

If you agree, does the body need to be established in law or would administrative establishment by the Scottish Government of the day be sufficient?

Please select one item
Ticked Yes
No
Please explain your answer.
Yes it needs to be established in law. If the new body could be established by the Scottish Government without reference to Parliament it could just as easily be dispensed with if it proved troublesome. To guarantee the new body's independence and it's robust scrutiny of the social security system it needs to have statutory authority.

If yes, what practical arrangements should be made for the independent body (for example, the law could state how appointments to it are made and the length of time an individual may serve as a member of the body)?

what practical arrangements should be made for the independent body
Inclusion Scotland would suggest that the arrangements for the new body should follow the lines of those for the UK Social Security Advisory Committee (i.e. see Section 9 of the Social Security Act 1980 and Part XIII Sections 170 through 174 of the Social Security Administration Act 1992). Appointments should be made through the normal public appointments process to Non-Departmental Public Bodies but with a provision that users of the social security benefits service, or their representatives should be included as full members of the advisory body . Normally we would be keen to directly involve users in such an advisory group but we acknowledge that participants will require expertise in policy and the detailed, technical aspects of benefits. Therefore it may not be possible to identify users with the necessary level of knowledge and be more appropriate to appoint individuals with direct links to users through representative organisations.

Should there be a statutory body to oversee Scottish social security decision making standards?

Please select one item
Ticked Yes
No
Please explain your answer.
Inclusion Scotland believes that this would be advisable. The advice provided by the Administrative Justice and Tribunals Council and its predecessor body helped, over time, to raise decision-making standards in the DWP. More good initial decisions lead to far fewer expensive appeals being heard. Therefore having the advice of such a body would not only lead to better, less variable and fairer decisions being made but would also tend to reduce administrative costs in the system.

If yes, should the be a separate body in its own right?

Please select one item
Ticked Yes
No
Please explain your answer.
See above. To guarantee the body's independence and to ensure that the advice offered was robust it would be better if the body advising on decision-making standards was separate from Government.

Do you have any other views about the independent scrutiny of social security arrangement in Scotland (e.g. alternative approaches)?

about the independent scrutiny of social security arrangement in Scotland
See our earlier comments about the involvement of end-users of the service in monitoring the social security system, its regulations and performance. We believe that disabled people themselves, and their representative organisations, have a valid and useful contribution to make to scrutiny of the system . If the new Advisory group is to be a statutory body, the primary legislation should not be too prescriptive about its functions. As this is a completely new Social Security system there is merit in setting out its remit in broad terms but allowing for flexibility in light of emerging developments, needs, etc.

Disability Benefits

Please explain your views (both positive and negative) on disability living allowance.

Please explain your views (both positive and negative) on disability living allowance.
Disabled people at our engagement events in Edinburgh, Greenock, Dundee and Oban were largely supportive of Disability Living Allowance (DLA), especially when compared to Personal Independence Payments (PIP). They gave a variety of reasons for their support – • Disabled people liked DLA because they had choice as to how they spent the money they received. Disabled people used their DLA for a variety of purposes not restricted to "care" and mobility including, special diets, extra heating costs, laundry costs, their disproportionate need for goods like washing machines, microwaves, cost of having to shop more expensively locally rather than more distant supermarkets because of transport issues and having to carry heavy bags of shopping • Claims for DLA required far less people to be assessed face to face before receiving an award. • In many disabled people’s experience DLA awards could be for longer periods (i.e. for 10 years or “life”) if the condition was a progressive or permanent one. This was not their experience with PIP – e.g. several wheelchair-users with a complete inability to walk who attended our events had been awarded PIP for 2 years. They were angry that they face repeated PIP assessments when their condition will never improve. • In general many disabled people preferred the DLA claim form to the PIP claim form. They stated that the DLA claim form allowed them to say how their impairments or conditions affected their everyday lives. In contrast the PIP form was seen as being restrictive requiring people to state only how their condition affected their ability to perform specific tasks. • Disabled people and their carers preferred being able to pick up the DLA form from a CAB or Post Office rather than the lengthy phone call that was required before they could even be sent a PIP application form. From Inclusion Scotland's perspective DLA is also a benefit with a more "social model" approach. For example the extent to which a person’s impairment or condition is judged to affect them is compared against “the yardstick of a normal life” rather than the person’s ability to complete a list of specific (and potentially arbitrary) functional tasks. Additionally claimants do not need to show that any additional requirements resulting from their impairment or condition are “medically essential” – just that they are reasonable. Negatives of DLA: • The DLA application form was seen as too long and complex by many disabled people – however many of those who expressed this opinion also said that the PIP form was just as long and even more complex. • A minority of disabled people at our events expressed a preference for the points based system of PIP over what they saw as the vaguer DLA system. • Even with DLA many disabled people still had difficulty in meeting the extra costs of disability suggesting that it is inadequate particularly for those with a high level of impairment. • Disabled people in receipt of social care were very critical of their care component being taken from them by local authorities to pay for their care. They pointed out that this left them without the money they needed to pay for other additional costs such as fuel, laundry, special diets etc. Overall a substantial majority of disabled people at our events said that they would prefer the new Scottish disability benefit to be more like DLA than PIP.

Please explain your views (both positive and negative) on personal independence payment.

Please explain your views (both positive and negative) on personal independence payment.
Positives: • A minority of disabled people and carers, some who were new claimants with no experience of claiming DLA, found the PIP application and assessment process to be relatively straightforward. • Some disabled people found PIP entitlement criteria easier to understand. • Some disabled people and advice workers found the new points based entitlement criteria easier to use to gain entitlement. However advice workers stated that without information on and an understanding of what information was required to score points it was difficult for people to complete the forms. Negatives: The disabled people attending our events had a predominantly negative view of Personal Independence Payments (PIP). • Most disabled people felt that the new application form for PIP was just as long and complex as the DLA form it replaced but with the added disadvantage that it did not allow them to say how their impairment(s) affected their everyday lives. • Even some with positive views said that they would not have managed to negotiate their way through the process without the assistance of local DPOs, advice and/or advocacy services. • Several thought it a breach of trust that they had been awarded DLA "for life" and yet were now being told that they had lost, or might in the future lose entitlement. • Many disabled people had experienced long delays in waiting for an assessment and the award of benefit. • Other disabled people had very negative experiences at assessment itself including having to travel long distances to get to an assessment centre; not being listened to by the assessor; being treated in an offhand way; supportive medical information not being sought either before or after the assessment. • Many disabled people stated that the whole reassessment process was extremely stressful for both themselves and their families. Some had literally been reduced to tears and become depressed through fear of losing their benefits and/or their Motability vehicles/scooters etc. • Several people had already successfully appealed decisions not to award PIP. They were scathing in their comments about the incompetence, lack of humanity and disrespect shown by DWP staff and being deprived of benefits for months whilst they awaited their appeal hearing. • Some disabled people stated that they thought that PIP was simply an unfair cost saving measure and that the DWP were making things difficult to try and dissuade people from claiming what they were entitled to. From Inclusion Scotland's own perspective we view the introduction of PIP as a straightforward attack on the living standards of disabled people. PIP will increase the numbers of disabled people living in poverty and the depth of the poverty they experience by denying benefit entitlement to those who would previously have qualified . Though we understand that the DWP are reviewing down the likely level of savings derived from the introduction of PIP the proportion of disabled people losing the higher rate of the Mobility component seems to be in line with DWP forecasts. This will eventually result in over 45,000 Scots disabled people losing the Higher rate Mobility DLA/Enhanced Mobility component of PIP. This is already resulting in disabled becoming more socially isolated as they lose the ability to meet the extra costs of engaging in family and community life. Those who are additionally losing their Motability vehicles often have no alternative way of travelling available (because of the lack of accessible public transport) and in some instances are losing their means of travelling to work. Tens of thousands will also lose passported benefits such as automatic entitlement to concessionary travel and the Blue Badge scheme further increasing their social isolation and imposing increased costs alongside reduced household income.

Please explain your views (both positive and negative) on attendance allowance.

Please explain your views (both positive and negative) on personal independence payment.
The vast majority of disabled people who attended our engagement events were of working age and therefore had no personal experience of Attendance Allowance. A small number although over retirement age had carried entitlement to DLA into their retirement - a few of these were still awaiting a PIP assessment because they were under 65 on the day that PIP was introduced. Therefore less was said on Attendance Allowance than the other main disability benefits. However Attendance Allowance was liked for several reasons – • The application process was seen as simpler. • It was seen as a positive that the views of carers, care workers and social workers who knew the disabled person and how their impairments affected their daily lives were sought and seemed to be valued in a way that they were not in the PIP process. • That it was a helpful cash benefit which helped older disabled people meet additional costs. Negatives: • That older disabled people getting Attendance Allowance did not receive any help with mobility costs. Disabled people thought this unfair and several called for entitlement to a mobility component to be extended to those in receipt of Attendance Allowance. However it was acknowledged that this might be expensive – but, if these extra costs are not addressed via benefits then it is the individual disabled person who has to meet them if they can (very many cannot), thereby increasing risks of social isolation .

Please explain your views (both positive and negative) on industrial injuries disablement benefit.

Please explain your views (both positive and negative) on personal independence payment.
Inclusion Scotland did not ask about this benefit at the engagement events we ran. However we have in the past worked with individuals and groups of disabled people who have benefited from being awarded Industrial Injuries Disablement Benefit (i.e. ex-coal miners with conditions such as pneumoconiosis and emphysema and ex-shipyard & building workers with pleural thickening, asbestosis and mesothelioma). We note that these conditions are a legacy of Scotland's past as a centre of heavy industry and mining and that the number of working age recipients are likely to decline as time elapses and the people currently entitled to IIDB reach retirement age or die. For example deaths from mesothelioma are expected to peak between 2015 and 2020. Nevertheless nationally (UK) there were over 1,400 new awards of IIDB for mesothelioma and pleural thickening in 2014. Inclusion Scotland believes that the entitlement of those currently in receipt (and those likely to become entitled under current rules) should be protected as IIDB is, at best, poor but absolutely necessary compensation for the suffering, reduced earnings potential and shorter lives that these conditions almost invariably result in. We would be supportive of looking for other uses for the budgets attached to this benefit (if these are released by the UK Government) once commitments to current, and potential future recipients, are met. In the spirit of co-production this should involve discussion with and the participation of the DPOs, STUC and relevant trade unions who represent workers.

Is there any particular change that could be made to these disability benefits that would significantly improve equality?

Please select one item
Ticked Yes
No
Please explain your answer.
See above. The introduction of one extra cost disability benefit across the lifespan would be supported by disabled people and it would reduce the complexity of the system and administrative costs. Disabled people who expressed an opinion on the issue also believed that it amounted to age discrimination that there was no mobility component of Attendance Allowance as there was for both DLA and PIP. As they pointed out iif a condition or impairment worsened and restricted mobility and you were over 65 you got no extra help whereas if this happened before you were 65 you did. Disabled people thought that this was unfair and should be changed but acknowledged that it could be expensive to extend entitlement.

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

Please explain your answer.
Disabled people thought that the application system should be greatly simplified. A number of suggestions were made as to how this could be achieved - 1) Application forms for disability benefits should be available in advice agencies, post offices, GP surgeries etc. There should be no need to phone and undergo a lengthy phone interview before obtaining a form (as is currently the case with PIP). 2) The application form should be simplified. Several questions on both the DLA and PIP forms asked for the same/similar information as requested earlier in the form. This was viewed as unnecessary and simply an attempt to catch people out. 3) Staff in the new Scottish Social Security Agency (and those carrying out assessments for it) should receive Disability Equality Training to ensure that they understood the barriers that disabled people faced and were more empathetic/sympathetic in dealing with disabled people who are seeking to implement their rights – not begging for charity - and to whom they are providing a service. All of the above suggested changes were seen as positive and likely to restore some of the dignity and respect that disabled people have been deprived of through the adoption of the PIP application regime.

How should the new Scottish social security system operate in terms of the eligibility criteria set for the benefit?

Please explain your answer.
The vast majority of disabled people thought that the entitlement criteria for DLA were fairer than the entitlement criteria for PIP and, in general, led to good decisions. Though some observed that this had only been achieved after years of challenging entitlement decisions to widen the criteria so that they began to meet the many additional costs of disability. Disabled people stated that the new PIP 20 metre "walking test" was very unfair and believed that it was depriving disabled people of essential support with mobility. It was seen as particularly unfair that people who had been assessed and given lifetime/long term awards of the Higher Rate Mobility component of DLA were being deprived of this when re-assessed for PIP. Many disabled people also thought that the entitlement criteria for PIP were also unfair to people with "invisible" impairments such as mental health issues or learning difficulties and made it more difficult for them to qualify. They were also very critical of the PIP assessment's seeming inability to deal with variable conditions and impairments. Fluctuating impairments/ health conditions, e.g. like MS, which is ongoing, mean that health can deteriorate/ barriers increase over time, yet can also be characterised by periods of remission, etc. Yet the PIP assessment focusses on whether someone can or cannot do something when the answer may be yes today but possibly no tomorrow.

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?

Please explain your answer.
Disabled people at our events told us that - 1) There should be far fewer assessments: People with life-long/permanent or progressive conditions who have already been awarded/assessed for the highest rates of disability benefits should not need to be re-assessed at all or at worst very infrequently (e.g. once every 10 years). 2) Most disabled people were in favour of the great majority of decisions on entitlement and the award of benefits being based on "paper" assessments. This, like DLA and AA would be where the disabled person's evidence in their application and supportive evidence from those who knew the impact of the disabled person's condition/impairment well (e.g. carers, care workers, social workers, OTs and health professionals such as GPs, Consultants, CPNs etc.) was treated as valid and generally accepted unless there was compelling evidence to the contrary. 3) In cases where assessments were seen as necessary (e.g. for fluctuating or variable conditions or where the “supportive” evidence accompanying the application did not match the disabled person’s) they should only be carried out by qualified health professionals with appropriate experience in treating/diagnosing the impairment/conditions being assessed. That is that midwives and physiotherapists should have no role in assessing people with mental health conditions and/or learning difficulties. However we would emphasise once again that the best judge of the impact of a condition or impairment is the disabled person themselves. Several of these suggested changes would also reduce bureaucracy and the bill for assessments releasing money which could be used to support more disabled people.

How should the new Scottish social security system operate in terms the provision of entitlements and awards (at present cash payments and the option of the Motability Scheme)?

Please explain your answer.
Disabled people at our events were very strongly in favour of benefits continuing to be paid in cash. The vast majority were opposed to "in kind" payments for aids and adaptations replacing cash and this was in line with earlier consultation work Inclusion Scotland carried out around now abandoned DWP proposals to change the nature of awards. There was unanimous support for the Motability scheme continuing in any future Scottish disability benefits system with the vast majority of disabled people seeing it as good service and essential. A few people wanted to see improvements in the scheme however with greater choice in vehicles being made available.

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?

Please explain your answer.
Inclusion Scotland would suggest that the following general principles should apply to reviews and appeals (some of which are addressed elsewhere in the consultation document: • Emphasis should be on good decision-making first time round, not as now where 65 - 70% of appeals are won at tribunal. Effectively means people’s rights are being unjustly denied for very long periods on a large scale with increased poverty , social isolation and massive administrative costs. • Importance of clear, accessible communications and criteria, how will be assessed, so good decision-making promoted and poor decision-making can be confidently challenged • Importance of access to independent advocacy, expert advice, legal support, including specialist legal advice. • Importance of ensuring that exercising rights to review/ appeal do not mean that any individual incurs additional costs or loses out in any way. • The right to a fair hearing is a human right under the European Convention on Human Rights The disabled people we spoke to have had very negative experiences of Mandatory Reconsiderations for ESA. They believe it is completely unfair for there to be no time-limit on how long the DWP may take to review their case and that reconsiderations are merely a delaying tactic to delay appeals. Disabled people also believe that it is completely unfair to deprive someone of the benefit they were previously entitled to whilst waiting indefinitely for a fresh decision at review or appeal. Therefore they believe that there should be strict time limits on reviews. On request the Scottish Social Security Agency should take no more than one month to review a decision and after that time period has elapsed the disabled person should have the right to lodge an appeal if no decision has been made or the decision still goes against them. Disabled people also believed that where a disabled person was previously in receipt of a benefit and they have now been denied it because of a re-assessment they should retain their previous entitlement until the review and/or appeal has been completed. Disabled people thought it completely unfair that when being re-assessed for PIP they are currently losing their mobility component, and thus also their Motability vehicles/scooters, only for their entitlement to be re-instated at appeal but having been deprived of their means to get about for 6 months or more.

We 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. With this in mind, do you think that timescales should be set for applications, assessments and decision-making?

Please select one item
Ticked Yes
No
Please explain your answer.
The vast majority of disabled people that we asked thought that there should be strict timescales for applications, assessments and decision-making in the new Scottish Social Security system. A large proportion of disabled people thought that the maximum time it should take from application to an award of benefits (including an assessment if necessary) should be no more than 3 months. A smaller proportion were in favour of an even shorter timescale of one month. However it was accepted that those applying should bear responsibility for delays if decision-makers were kept waiting for essential evidence. In those circumstances it was thought that a decision should be made no longer than one month following all the requested evidence having been provided to the decision maker. This would be akin to the system operated by the Scottish Public Service Ombudsman's Office and Inclusion Scotland believes that it would be worthwhile for Scottish Government to investigate how well this system works for decision makers in that office and also for those using its services. Inclusion Scotland believe that disabled people subject to lengthy delays over and above those set should qualify for monetary compensation in addition to he award of backdated benefits. It seems completely inconsistent that public policy can require a train company to award set compensation for a train being an hour late but a disabled person can be denied the benefit they need to meet additional costs for 6 months or more and receive nothing

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

what evidence and information, if any, should be required to support an application for a Scottish benefit
The primary evidence should come from the disabled person themselves - that is on the ways that their impairment(s) impact on their everyday lives. However supportive evidence could also be supplied from - • Education: For example attendance at the Royal National School for the Blind could be acceptable proof of blindness whilst a Special Educational Needs Assessment might also include supportive information • Social work/social care: Assessments of care needs might have already occurred and these could contain supportive information. • The Independent Living Fund Scotland (ILFS) might also hold relevant information as might integrated Health & Social Care Services. • Health: Medical records held by GPs, Consultants and CPNs and/or Occupational Therapists' reports might also contain supportive information. We would emphasise that the disabled person may often be in the best placed to assess which health professional might be in the position to supply relevant and supportive information. On the other hand other disabled people, for example those with learning difficulties, might need to be prompted or to be assisted in identifying who might hold relevant and supportive evidence.

Who should be responsible for requesting this information and who should be responsible for providing it?

Please explain why.
Disabled people expressed a very strong preference for the Scottish Social Security Agency to be responsible for requesting this information. However It should always be within the control of the applicant what information is provided. Disabled people should be able to the information before it is passed on, and authorise its transmission onto specific others. They pointed out that at present it was often the case that neither the DWP nor assessors were seeking this information prior to an assessment or decision on an application. Where they did seek it they put the onus on the applicant seeking supportive medical evidence from their GP or consultant. Disabled people reported to us that GPs were charging various amounts for such evidence varying between £30 to over £100 for a supportive letter. Several disabled people stated that they simply could not afford to pay what their GP was charging and stood to potentially lose their benefits because they were unable to secure supporting medical evidence. Inclusion Scotland believes that a joined up Social Security system should be able to secure such evidence without incurring the exorbitant costs regularly imposed on disabled claimants. A way to achieve this would be to require GPs to provide such evidence to claimants free of charge as part of their contracts. The Social Security Agency should, with the consent and oversight of the claimant be able to require that the information be provided by any relevant medial professional whom the claimant believes could provide evidence helpful in decision-making on an application or review.

Should the individual be asked to give their consent (Note: consent must be freely given, specific and informed) 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?

Please select one item
Ticked Yes
No
If no, please explain why.
Disabled people were largely supportive of this proposal though a few voiced opposition to anyone else other than their regular GP being given access to their medical records. A minority of people had concerns about potential breaches of confidentiality by Scottish Social Security Agency staff. Others did not believe that such access would necessarily speed up decision making. However support strengthened when reassurances on confidentiality were provided and emphasis was placed on it being the disabled person's choice.

If the individual has given their permission, should a Scottish social security agency be able to request information on their behalf?

Please select one item
Ticked Yes
No
If no, please explain why.
Because it would assist in determining entitlement and awarding benefit more speedily.

Do you think that the impact of a person’s impairment or disability is the best way to determine entitlement to the benefits?

Please select one item
Ticked Yes
No
If yes, which aspects of an individual’s life should the criteria cover and why?
Inclusion Scotland would agree that the impact of the barriers a disabled person experiences as a result of their impairment(s) is the best way to determine entitlement but the person who is best placed to know what those barriers are is the disabled person themselves. One of the biggest problems with the PIP criteria is that they are based on a medical/functional approach to disability rather than on the social model. Therefore in general the aspects of life covered in the Disability Living Allowance application process should be the criteria used. Disabled people told us that although the PIP points based system had some advantages - in that it was clearer when points would be awarded, and when they would not - it was also much more restrictive in which aspects of life were covered. The other problem with the PIP points system is that it does not deal with variable conditions well. PIP asked binary questions such as "Can you do this or not?" whereas for people with variable conditions the answer may be "Yes today just now but not later today or tomorrow!. Therefore we would suggest that the best aspects of the eligibility criteria of both DLA and PIP should be drawn on in setting the criteria for a new Scottish disability benefit.

Currently there are only special rules for the terminally ill but should there be others?

Currently there are only special rules for the terminally ill but should there be others?
Consideration should be given to giving speedier access to disability benefits to those who have acquired a substantial and likely to be long lasting impairment due to a single event such as a road traffic accident or stroke. The sudden acquisition of an impairment can be difficult to adjust to and by the time care support and benefits are in place many people who were previously in employment may have lost it. This is because they may, due to their new impairment and inaccessible transport have no means of travelling to work. Inclusion Scotland would argue that there is a case for speedier access to benefits that might assist a disabled employee in returning to and retaining work. There is also a very strong case for the devolution of Access to Work so that a more supportive system of wrap-around employability support can be put in place.

How could this be determined?

How could this be determined?
We believe that all that might be required is proof of employment and of medical confirmation of the ongoing and substantial nature of the impairment acquired - e.g. loss of mobility through paralysis.

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

What do you think are the advantages and disadvantages of automatic entitlement?
The great advantage would be that this would reduce the number of stressful applications and assessments that disabled people with substantial impairments would be forced to undergo. For the Government and Social Security agency it would similarly reduce the number of completely unnecessary and expensive assessments that they had to carry out. We can see no particular disadvantage arising from this approach.

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?

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
If they had given their consent for this we cannot see why not.

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

Please select one item
Ticked Yes
No

Should there be additional flexibility, for example, an up-front lump sum?

Please select one item
Ticked Yes
No
Please explain your reasons.
Inclusion Scotland can see the advantages of providing an up-front lump sum as it could assist in improving a terminally ill person's quality of life in their few remaining months. However we would have concerns if this proposal was to involve any trade-off in terms of the disabled person's continuing entitlement to disability benefits. That is if this proposal was adopted we would want assurances that if disabled people were to survive for more than the period covered by their lump sums that they should continue to be able to access further disability benefit payments. There may also be a case for an ‘emergency disablement benefit’ for terminally ill people or people suddenly acquiring significant impairment(s). A lump sum in such circumstances akin to the additional support provided by ‘Best Start’ grants could assist people in adjusting to life-changing circumstances. For example a major accident, stroke, brain aneurism etc. can create an unexpected and sudden need for additional funds to make adjustments and to avoid the risk of poverty, job loss, etc.

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 select one item
Ticked Yes
No
Please explain why.
Disabled people at our engagement events were largely very supportive of this proposal. They viewed a consistent approach to eligibility as desirable and likely to reduce the number of cliff-edges that they experienced throughout their lives where they stood to potentially lose support. However some disabled people thought it right that eligibility should be judged differently during childhood as younger children's capacities (for example to walk or plan a journey ) could differ considerably from adults or older children's. Nevertheless these issues are far from insurmountable and could and should be tackled in order to create a less complex more supportive single disability benefit for all age groups.

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

Please explain your answer.
See above - 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. It would also tackle the unjustifiable age-related discrimination that older disabled people are subjected to The advantages would include the entitlement criteria and method of claiming a single benefit being better understood and more widely known.

Could the current assessment processes for disability benefits be improved?

Please select one item
Ticked Yes
No
Please explain how.
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. Even though over 70% of DLA awards were based on this type of "self-assessment" there were very low rates of fraud (under 1%, i.e. 990 applicants out of 1000 gave correct information about how their conditions affected them). There was therefore no justification for the move to the PIP assessment regime which is far more stressful for far more disabled people - that is over 90% of PIP applicants are being subjected to assessments compared to 30% of DLA applicants. Moreover those who are being awarded PIP are generally being awarded it for shorter periods and face having to undertake an assessment every 2 to 3 years. These largely unnecessary assessments as well as being extremely distressing for disabled people and their families also impose massive costs on the Social Security system. If 3 times as many people are assessed and it costs 3.5 times as much to carry out the assessments (National Audit Office estimate) and they are conducted more frequently, then the ongoing cost to the Social Security system could be 30 times as high or more. This is hundreds of millions of pounds going to private companies in profits that would be better used in supporting thousands more disabled people in leading independent lives. The number of assessments could also be reduced by not subjecting disabled people with permanent life-long conditions to more than one during their lifetimes. Inclusion Scotland therefore welcomes Scottish Government's proposals on this issue. Disabled people also told us that they had to travel long distances to have their assessments. Those who might still need to be assessed would prefer if at all possible to be seen nearer to their homes (possibly in them), in community hospitals or GPs surgeries. This would both reduce stress and save in travel costs both for disabled people and public finances. It cannot be right that disabled people incur a cost in exercising their right to claim a benefit to which they are entitled and yet many are not offered any refund for travel to remote assessment centres.

For those people that may require a face-to-face assessment, who do you think should deliver the assessments and how? For example, private organisation, not-for-profit organisation, public sector body or professional from health or social care.

people that may require a face-to-face assessment, who do you think should deliver the assessments and how
Disabled people at all our engagement events completely rejected any role for the private sector in carrying out assessments. In addition the National Audit Office found that in August 2015 there was a backlog of at least 280,000 ESA assessments and both Atos and Capita have also consistently failed to meet assessment report quality targets for personal independence payment since October 2013. See www.nao.org.uk/report/contracted-out-health-and-disability-assessments/ The perils of contracting out the private sector are well evidenced by the example of Concentrix who wrongly accused people of fraud and stopped their benefits in order to meet DWP targets. Similarly although the private firms contracting with DWP estimated that they would only need to see 70% of applicants at face-to-face assessments they in fact are seeing over 90%. Why? Because they get paid for every assessment that they carry out. That is they have a perverse incentive to identify disabled people as requiring an assessment when in fact they already possess all the information they require to carry out a paper assessment. Put even more simply they value profits over people and should have no place in a Scottish Social Security system. There was near unanimous agreement that health professionals should carry out any assessments that still needed to be carried out. However disabled people were very critical of the current practice of physiotherapists and midwives carrying out assessments on people with learning difficulties or mental health issues and where the judgement of a nurse carrying out an assessment was given more credibility and weight than the opinion of a consultant. Disabled people emphasised that only health professionals who were properly qualified and experienced in treating people with their condition or impairment should be carrying out assessments. It is still the case however that a face to face health assessment should only be part of the process of evidence gathering. Health professionals are neither experienced nor expert in making decisions on benefit entitlement and their judgement should not take the place of the decision makers. Nor should the observations they make in a 40 min to 1 hour assessment over-ride the disabled person's often life-long experience of the barriers they encounter because of the social impact of their impairment.

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

What are the advantages and disadvantages of different types of assessments e.g. paper based, face to face, telephone?
The advantage of paper assessments is that they are far less expensive than face-to-face assessments and far less stressful for the vast majority of disabled people. They also allow the disabled person to set out how their condition or impairment (s)affect their everyday lives and thus give due value to the lived experience of disabled people. Inclusion Scotland believes that paper assessments should be the rule and face-to-face assessments the exception. One of the disadvantages of paper assessments is that they generally require a substantial number of questions to be answered in order to provide the decision maker with sufficient evidence on which to base a decision. This generally makes application forms long and complex particularly for disabled people with poor literacy and or learning difficulties. However it is difficult to see a way of avoiding this as both DLA and PIP have lengthy complex forms even though PIP was supposed to do away with the need for such forms. Face to face assessments should only be required where there is some conflict between what the disabled person has said about the way that their impairment affects them and the supportive medical and other evidence. Even then it should be acknowledged that the disabled person is in the best position to assess the impact of their impairment on their lives and health. For example pain affects different people in different ways and the disabled person is the only one who genuinely knows the severity of the pain that they personally experience. Thus GPs will often say in supportive letters - 'My patient tells me that they experience great pain in walking' - rather than stating outright that their patient experiences great pain. However face to face assessments do afford an opportunity to iron out inconsistencies in the written evidence presented and this could be of advantage to disabled people who have been unable to secure assistance in expressing themselves properly on paper. Telephone assessments would be extremely difficult and stressful for large numbers of disabled people (i.e. those with learning difficulties, mental health issues exacerbated by anxiety, sensory impairments (not only deaf people are disadvantaged by telephone interviews, so too are people with visual impairments who have no way of writing down what is being said to them) and communication impairments (e.g. stroke survivors, cerebral palsy). Nevertheless some disabled people might prefer them and they should certainly be considered as an option. The key point is that there should be a variety of ways of carrying out assessment, given the different of communication barriers that disabled people can experience.

How could the existing assessment process be improved?

How could the existing assessment process be improved?
By ending the involvement of private companies. By ending the assessment of disabled people by health professionals with no relevant qualifications or knowledge of the condition/impairments being assessed. By ending repeat assessments of disabled people with permanent life-long conditions or impairments. By requiring those making decisions on entitle3ment to request supportive medical evidence BEFORE deciding on whether an assessment is required. We have spoken to disabled people and carers who have supplied evidence from consultants of permanent loss of mobility who have nevertheless been subjected to a medical assessment of whether they could walk. They have thus been subjected to completely unnecessary worry and fear about the potential loss of their benefits. This has led in many instances to people's physical and mental health deteriorating significantly. It is Inclusion Scotland's belief that many assessments are unnecessary even under current criteria but are still carried out because they make money for the private company contracted to provide them. Only when the profit motive is removed from the assessment process will such abuses end.

Could technology support the assessment process to promote accessibility, communication and convenience?

Please select one item
Ticked Yes
No
Please explain why. If yes, please explain what technology would be helpful e.g. Skype, video conferencing.
Although Inclusion Scotland can see how this might be a positive development especially for people in remote rural areas such as the Highlands and Islands There may also be some disabled individuals who, because of the nature of their impairment, will prefer their assessments carried out in this way. Therefore we would approve of it being an option offered. However only a small minority of disabled people have access to such facilities and the technology would thus need to be provided at certain locations if disabled people were to be encouraged to use it (over a third of disabled people do not have access to or use the internet - see further questions on use of digital first for a full outline of the problems of a new technology centred approach). There would be a strong case for locating such facilities in DPOs and Centres for Inclusive Living where technology could sit alongside advice and advocacy staff able to assist disabled people in completing applications, advocating on their behalf, and assisting with appeals. In addition it is difficult to see how an assessment of something like walking ability could be conducted through Skype or video-conferencing.

If the individual’s condition or circumstances are unlikely to change, should they have to be re-assessed?

Please select one item
Yes
Ticked No
Please explain why.
There is no useful purpose served by requiring someone whose condition is unlikely to change to undergo repeated, expensive assessments. Instead it imposes completely unnecessary stress on them and is a waste of public money that could be better spent in supporting more disabled people.

What evidence do you think would be required to determine that a person's condition is not likely to change?

evidence do you think would be required to determine that a person's condition is not likely to change
Medical evidence would usually be required.

Who should provide that evidence?

Who should provide that evidence
A health professional such as a person's GP or consultant(s).

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 select one item
Ticked Yes
No
Please explain why.
Disabled people that we asked were divided in their opinions on the use of benefits to pay for reduced energy tariffs however there was very little support for their use in paying for adaptations to people's homes. A number of disabled people were not convinced of the benefits of their benefits being used to pay for reduced energy costs. They believed that the money was theirs to spend as they chose and that this would reduce their choice. Some also felt that energy providers were making excessive profits and that this should be tackled - otherwise even with reduced tariffs they would still be getting a poor deal. Finally some fear that what might be presented as a choice just now would in time become mandatory. However in those workshops where the energy tariffs scheme was explained as being akin to the Motability scheme and that participation in it would be entirely voluntary then support for the proposal rose dramatically. Based on the proviso that entry into and ongoing participation in the energy tariff scheme shall be entirely at the choice of disabled people then Inclusion Scotland would endorse the proposal. However the great majority of disabled people that we asked were opposed to benefits being used to pay for adaptations to their homes. Disabled people pointed out that adaptations to homes which were essential for the safety and independent living of disabled tenants currently have to be made and paid for by local authorities and Housing Associations. Disabled home owners are also currently eligible for grants for home adaptations from local authorities. Disabled people thought that it would be completely unfair for this cost to instead be passed to disabled tenants and home owners. They also pointed out that other attacks on their benefits had left many disabled people with less money and that this would be yet another cost imposed on them leaving them with even less money and at greater risk of poverty. The only disabled people who were supportive of the proposal that their benefits were used to pay for adaptations were either private tenants or home owners. Several of these disabled people had applied for grants to adapt their properties and had either been refused them or experienced very lengthy delays. They therefore viewed the ability of using their benefits to pay for adaptations potentially advantageous - though some pointed out that this was effectively what they were doing already.
What alternative support do you think we should be considering?
As stated above support by way of reduced fuel tariffs might be acceptable to disabled people but Inclusion Scotland believe that the scheme would need to be well understood and promoted otherwise take-up might be low. The conversion of benefits to pay for adaptations would not be acceptable to the great majority of disabled people as it would be passing on costs to them that are currently met either directly by local authorities and housing associations or indirectly via Scottish Government grants for adaptations. Inclusion Scotland would be extremely concerned to see disabled people's entitlement to benefits being further eroded by such a scheme.

Would a one-off, lump sum payment be more appropriate than regular payments in some situations?

Please select one item
Yes
Ticked No
Please explain why. If yes, what are they?
The only situations in which Inclusion Scotland could envisage a lump sum payment as being potentially more appropriate is where a disabled person has a terminal diagnosis and is expected to die in the following 6 months or where there is a sudden onset of high level impairment. However we would prefer to see lump sums paid in addition to exiting entitlement rather than instead of regular payments.

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

What would be the advantages and disadvantages of such an approach?
The advantage would be that the disabled person might be able to use their lump sum payment to achieve a better quality of life in their few remaining months or in adapting to acquiring a massive impairment. This could also potentially save in administrative costs with one payment being made instead of several. The disadvantages would be that whilst prognoses tend to over-estimate life expectancy many disabled people with a terminal diagnosis nevertheless manage to survive for longer periods, sometimes for years . It would be completely wrong for disabled people with continuing additional costs to be denied these on the basis that they had earlier agreed to a lump sum payment. As stated above Inclusion Scotland would prefer lump sums to be paid in addition to regular payments of disability benefits and not instead of them. Therefore we would urge great caution and further detailed consultation on how such a system might operate before adopting this proposal as policy.

Should the new Scottish social security system continue to include the use of mobility allowance to lease cars, wheelchairs or scooters?

Please select one item
Ticked Yes
No
Please explain why.
Across the UK approximately one in three of those entitled to the Higher Rate Mobility component of DLA use it to lease Motability vehicles or scooters. The proportion doing this in Scotland may be even higher because a substantial number of the population live in rural or semi-rural areas where cars are essential to reach services as public transport services in such areas are often infrequent and inaccessible. In turn one in three of those who do lease Motability vehicles/scooters use their vehicles to travel to work. Therefore the loss of the Motability service would be felt very keenly by disabled people especially those in rural areas and those in work. Inclusion Scotland considers the Motability vehicle leasing scheme as essential in supporting disabled people to participate in family, social, community and economic life.

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

new Scottish social security system support older people with mobility problems not eligible for a mobility allowance
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. However if older disabled people are to have their mobility needs recognised it should follow that they too should have access to the Motability scheme. Even if benefit entitlement to the mobility component was not extended tot his group they should be enabled to access the Motability scheme if they wish to do so. This might involve (with the older disabled person's agreement), all or part of their Attendance Allowance being paid to Motability before they receive it

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?

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?
• Bus drivers failing to stop when they see a wheelchair user waiting at the bus stop - presumably because it would interfere with the bus schedule. • Bus drivers questioning mental health service users and learning disabled people's entitlement to concessionary travel and asking "What's wrong with you?" in front of other passengers to their severe embarrassment. • Bus drivers driving off before people with limited mobility have taken their seats. • Bus companies resisting the acquisition of buses with scrolling screens and audio announcement of stops. • Scotrail requiring 24 hours notice of travel if they are to provide assistance, when this can be difficult for disabled people with employment (or for other reasons, like family emergencies) that can requires travel at short notice. But regardless of the reason for needing or wanting to travel at short notice, why should disabled people’s freedom to be spontaneous be curtailed when others can travel wherever, whenever and for whatever reason they please? • Airport staff (and other front-line transport staff) who are over familiar and treat disabled people as though they were children, speak to accompanying PAs rather than the disabled person, etc. • Taxi drivers who are either untrained in assisting wheelchair users or are resentful (and make no attempt to conceal it) of the time (actually very fast if the driver knows what they’re doing) involved in making sure that they are comfortable and safe when travelling in their taxis. These and other issues need to be addressed before those with mobility issues can travel as freely as other non-disabled people. The Scottish Government's own Accessible Transport Strategy addresses these and other issues which could be addressed if transport staff were properly trained in dealing with disabled people in a sympathetic manner.

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

additional support should be available for people who need more help with their application and during assessment
Inclusion Scotland believes that both advice and advocacy services will need more funding to assist disabled people. Some of the funding being provided to advice agencies should be used to train staff (and volunteers) in recognising the barriers that disabled people face and to their raise awareness that some disabled people will require advocacy support alongside advice support in order to progress their claims. All disabled people should eb able to access the advocacy and advice support that they need.

How could disability benefits work more effectively with other services at national and local level assuming that legislation allows for this e.g. with health and social care, professionals supporting families with a disabled child.

disability benefits work more effectively with other services at national and local level
Inclusion Scotland believe that nationally determined entitlements including for social care are currently undermined by local determined entitlement criteria. Local priorities should have no place in determining benefit entitlement which would create post-code lotteries and exacerbate portability issues caused by local variation in social care provision and charging. We believe that is important to keep the respective roles of each service distinct, so they are not all part of one pot. Thus there are differences between alignment where services are separate but better co-ordinated; integration where services remain distinct but overlap better rationalised and the subsuming of one or more services into another/others. Inclusion Scotland have commented elsewhere on the sharing of information. However there is much more that could be done to better join up services. The Scottish NHS are committed to reducing health inequalities and many of these arise through poverty and inequalities in income and wealth inequalities. If health professionals became more aware of how the receipt of benefits could increase well-being by reducing poverty and social isolation they might take a more holistic approach to the health of patients. This would involve health visitors, midwives, family nurses and other front-line health professionals providing active assistance in form filling, sign-posting and active referrals to advice and advocacy services and providing financial support to community health initiatives aimed at reducing poverty (e.g. foodbanks ). That is they would not be involved in determining entitlement to benefits but instead in assisting people to access their entitlement. There have also been very successful pilots of placing advice workers in GP surgeries who can then directly access patient records and identify supportive medical evidence relevant to PIP and DLA claims. These pilots have also demonstrated that this can lead to huge savings in GP appointment time and letter writing related to benefits claims. Thus welfare rights workers located in surgeries can release GP time allowing them to concentrate on treating patients rather than tying them down in paperwork. Inclusion Scotland would recommend that these pilots are promoted to GP surgeries and more widely rolled out. The Scottish Government's Welfare Reform, Health Impact Delivery Group could provide more information on this and other NHS initiatives to tackle the negative impacts of welfare reform. In addition Inclusion Scotland believes that social care and other services could do much more to support young disabled people in transition from school to adult life. Young disabled people often face the loss of social care support, friends and benefits during the same crucial period between when they are 16 to 18 and leaving school. For example we have spoken to young disabled people who were provided with taxis to attend school but who had these withdrawn when they left school and wished to attend college. Skills Development Scotland also count college as a positive outcome for disabled school leavers yet fail to track whether it does indeed lead to improved employability. We believe that social care, employability services and social security, by providing more support during this crucial period, could positively impact on young disabled people's life-chances. This should be seen as an investment rather than a cost because it would tend to reduce disabled people’s reliance on benefits, health and social care services in the longer term.
How do you think this might be achieved?
See above.
What are the risks?
Breaches of privacy involving reputational damage for the new social security system.

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 Earnings Allowance etc) in the benefits system?

Please explain your answers.
Inclusion Scotland are quite concerned that these questions are even being raised in this consultation. The purposes of IIDB and its supplementary allowances are set out in statute and well understood. IIDB replaced several earlier Workers Compensation Acts and benefits. 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. The consultation document refers to other income replacement benefits payable to disabled people. However Employment and Support Allowance (ESA) is far less generous than IIDB and about to become even less so with disabled people in the Work Related Activity Group receiving £30 a week less than previously would have been their entitlement. Inclusion Scotland view ESA, which is also means tested after one year as completely inadequate compensation for the loss of earnings that recipients of IIDB have experienced. Not only do many of those in receipt of IIDB have poorer health but in many cases their lives have been considerably shortened by acquiring serious diseases such as mesothelioma. Very few people in receipt of IIDB attended our engagement events. In many cases this would have been because they were simply too ill to do so. It would be quite wrong for anyone to be deprived of their current entitlement on the basis that they had no voice in the process. In the spirit of co-production we would again urge Scottish Government to discuss any proposed changes to IIDB with the STUC and other relevant trade unions representing those groups of workers who are currently likely or actual recipients. The reference to workplace health and safety having improved since 1946 is greatly misplaced. Thousands of people are still dying each year as a consequence of being exposed to asbestos in the 70s and 80s. Because of past disregard of the dangers of asbestos it continued to be used in building insulation - including in council housing, public buildings, schools and hospitals until well into the 1970s. As a consequence not only building workers but office workers, tenants, teachers, schoolchildren, health workers and patients continue to be potentially exposed to asbestos, one fibre of which has been found sufficient to cause mesothelioma. Therefore although we can agree that the number of claimants will decline over time there are still likely to be casualties of our past lax healthy and safety regime.

What is right with the IIDB scheme?

What is right with the IIDB scheme?
That it compensates those who have acquired health conditions as a result of their employment for their loss of health and earnings.

What is wrong with the IIDB scheme?

What is wrong with the IIDB scheme?
One of its key drawbacks is that it requires the disabled person not only to prove that they have acquired an impairment but that this was because of where they worked and the role in which they were employed. For example as stated above many thousands of people who did not work in the building industry have nevertheless been exposed to asbestos and will become ill and die because of that exposure. Yet they will receive no compensation either from the state or the industries that exposed them to such a life threatening substance. That seems far from equitable. Another drawback is that IIDB is limited to relatively few conditions most of which are associated with heavy industries that no longer exist or have been inconsiderable decline for over thirty years. Thus access to IIDB is likely to become increasingly difficult as time goes on.

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

Please select one item
Ticked Yes
No
What would be the advantages or disadvantages of such an approach?
Inclusion Scotland are unsure of what is intended here. Life-limiting conditions are already treated differently under IIDB rules as they open up access to more generous rates of entitlement than less severe conditions.

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

Please select one item
Ticked Yes
No
What are they, and why? What would be the advantages and disadvantages of such an approach?
It might be more beneficial for people with terminal conditions whose prognosis is that they are not expected to live very far into the future. However we would have to point out that although most prognoses tend to over-estimate life-expectancy there will always be those who live longer than predicted. In fact life-expectancy for terminal conditions can normally be described by a bell curve with outliers at both ends of the curve. We would have concerns that if someone responded better to treatment than most others and survived past the period covered by a lump sum award that they might not receive any additional assistance despite still suffering an ongoing loss in earnings. Inclusion Scotland would advise that consultation and agreement is sought with the STUC and trade unions representing affected groups of workers before any such change is contemplated. Inclusion Scotland would be completely opposed to any such change that was simply aimed at saving benefit costs.

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

Please select one item
Yes
Ticked No
If yes, what should be the priorities be? What barriers might there be to this approach?
Inclusion Scotland are very sceptical of the UK Government's approach to so called welfare "reforms" which seem predicated on saving benefit costs rather than improving the service and benefits available to disabled people. We would view any attempt to deprive disabled people of existing or future entitlement to IIDB with extreme dismay and view it as evidence that, far from adopting a different approach from that of the UK Government, Scottish Government was instead intent on mimicking their approach.

Do you agree with the Scottish Governments approach to Severe Disablement Allowance?

Please select one item
Ticked Yes
No
Please explain why.
The Scottish Government's approach seems fair and equitable.

Carer's Allowance

Do you agree with the Scottish Governments approach to developing a Scottish carers benefit?

Please select one item
Ticked Yes
No
Please explain why.
Caring responsibilities have been inadequately recognised for a considerable period. Carers should receive at least the JSA rate though this is still inadequate as it is supposedly an "income replacement" benefit and no one works for as little as £73.10 per week.

Do you agree with our proposed short to medium term priorities for developing a Scottish carer's benefit?

Please select one item
Ticked Yes
No
Please explain why.
Inclusion Scotland supports both the increase in Carers Allowance proposed and the potential extension of entitlement to young carers.

How can we improve the user experience for the carer (e.g. the application and assessment process for carer's benefit)?

How can we improve the user experience for the carer
As a disabled people's organisation we do not feel qualified to comment on the application process for carers but would be supportive of the views expressed in Carers Scotland's response.

How can we improve the support given to young people with significant caring responsibilities - beyond what is currently available?

How can we improve the support given to young people with significant caring responsibilities - beyond what is currently available?
Scottish Government should consider extending entitlement to Carers Allowance to young carers aged under 16. This would be a recognition of the responsibilities they shoulder. Scottish Government should also consider relaxing the eligibility rules surrounding "full-time education" and entitlement to Carers Allowance. At present a young person seeking to gain qualifications at college loses entitlement to Carers Allowance if their time spent in studying exceed 21 hours per week. This acts as a block on young carers improving their skills and gaining employment and we would hope that something could be done to address this barrier to improving employability.

Do you agree with our proposed long term plans for developing a Scottish Carer’s Benefit?

Please select one item
Ticked Yes
No

Do you have any other comments about the Scottish Governments proposals for a Scottish Carer’s Benefit?

any other comments about the Scottish Governments proposals for a Scottish carers benefit
No.

Winter Fuel and Cold Weather Payments

Do you have any comments about the Scottish Governments proposals for Winter Fuel and Cold Weather Payments?

other commments
Inclusion Scotland warmly welcomes the Scottish Government’s intention to extend winter fuel payments to families with a disabled child in receipt of DLA/PIP higher rate care/enhanced daily living component. Families with disabled children face considerable additional costs and the WFP will be of considerable help to them.

Could changes be made to the eligibility criteria for Cold Weather Payments?

For example, what temperature and length should Cold Weather Payments be made on in Scotland?
Inclusion Scotland believes that the eligibility for CWP's should be examined with a view to changing them. Disabled people are disproportionately likely to suffer from fuel poverty. This is partially due to the fact that they are much more likely than non-disabled people to be living in a household on a low income (28% of all those living in poverty are disabled people) and partially because they are more likely to spend longer periods at home during the day as they are more likely not to be in employment (only 44% of disabled people are in work compared to 80% of non-disabled people). It cannot be right that low income households in geographic areas of Scotland which suffer very high levels of fuel poverty - such as the Western Isles - seldom qualify for CWPs. Though a large proportion of low income households live in consistent fuel poverty very few of them ever qualify for assistance from CWPs. Like CPAG Inclusion Scotland believes that it would be preferable to invest resources in a benefit that provided a more consistent boost to the income of households at risk of fuel poverty.

Funeral Payments

Are there other elements that you think should be included or explicitly excluded?

Please select one item
Ticked Yes
No
Please explain why.
For people who are eligible, a funeral payment only covers part of the cost. An average grant of £1400 is inadequate when basic funerals cost around £2000-3000, and this should be addressed. Inclusion Scotland would support the Scottish Campaign on Welfare Reform's suggestion that the Scottish Government should consider stronger regulation of the funeral market as costs seem to be rising at a pace well in excess of inflation.

How can we improve the process for identifying whether someone is responsible for the funeral and should receive the funeral payment?

How can we improve the process for identifying whether someone is responsible for the funeral and should receive the funeral payment?
Inclusion Scotland agree with CPAG in calling for the removal of the rule which requires information about whether an ‘absent parent’ is in receipt of a qualifying benefit before the other parent can claim a funeral payment. The current rule means that bereaved lone parents have to chase after ex-partners who are absent parents to pay for the funeral, or to prove estrangement. This causes stress, upset and complication at an already very difficult time. Instead if the deceased was a child, then the person responsible for them should automatically be eligible for the payment (if they are in receipt of a qualifying benefit).

In terms of the Scottish Funeral Payment, are there any qualifying benefits (e.g. Pension Credit) that you would add to or take away from the current qualifying benefit list?

Please select one item
Ticked Yes
No
Please explain your answer
Inclusion Scotland would support the addition of Pension Credit to the list of qualifying benefits. This benefit is only paid to pensioners on a low income and therefore it seems correct that it, like Universal Credit, should be a passport benefit for Funeral Payments.

Is the three month application window for a Funeral Payment sufficient time for claimants to apply?

Please select one item
Yes
Ticked No
If no, please explain your answer and suggest an alternative length of time in which a claim could be made.
We would agree with the Scottish Campaign on Welfare Reform's proposal that the period of claim should be extended to 6 months from the date of the deceased's death.

What are your views on the options for speeding up and simplifying the payment?

iews on the options for speeding up the grant
Inclusion Scotland would support CPAG's call for the introduction of a fixed amount of at least £700 for funeral expenses. Given the growing cost of funerals this is preferable to the current upper limit of £700 which requires proof of spend. It would also be very helpful for claimants to receive a decision in principle before evidence of costs has been submitted. This would help to ensure that individuals on low income do not get into debt covering funeral costs which are not subsequently reimbursed.

The other funds which are deducted from the DWP funeral payment are listed below. What sorts of funds do you think it is appropriate to deduct from a Scottish FP?

Funds in the deceased’s bank account
Please select one item
Ticked Yes No
Funeral plan/insurance policy
Please select one item
Ticked Yes No
Contributions from charities or employers
Please select one item
Yes Ticked No
Money from an occupational pension scheme
Please select one item
Ticked Yes No
Money from a burial club
Please select one item
Ticked Yes No

Which services should promote awareness of the funeral payment to ensure that claimants know about it at the relevant time?

ervices should promote awareness of the funeral payment to ensure that claimants know about it at the relevant time
Registrars of Births, Deaths and Marriages, the NHS, CABs, Local Authority Welfare Rights services etc.

Best Start Grant

Which services should promote awareness of the BSG to ensure that claimants know about it at the relevant time?

We know that there is a patchy awareness of the SSMG and that take up is low. It is important that people are able to access and receive the support that they are entitled to. We think that we can improve take up of the BSG by ensuring that it is promoted by services commonly used by people who will need support, for example the family nurse partnership and health visitors. We also think that the new baby box which will be available for all new mothers will be a good opportunity to raise awareness of the BSG.
Families could be supported to access Best Start Grants through midwives and health visitors (birth payment), childcare staff (nursery payment) and schools (school payment). This support should involve active referrals and signposting to other income maximisation services such as welfare rights and financial advice. Facilitating access to advice through universal services such as the NHS has proved to be extremely successful when the support is provided by midwives, health visitors and family nurse projects.

Discretionary Housing Payment

Could the way that DHPs are currently used be improved?

Please select one item
Ticked Yes
No
Please explain why.
In general DHPs can be very positive however Inclusion Scotland are aware of misuses of the discretionary powers surrounding DHPs. For example during the period when the Bedroom Tax was not fully mitigated one local authority's staff were asking those affected whether they had pets. If they replied that they did own a pet they were told that they were not eligible for a DHP on the grounds that if they could afford to feed a pet then they could afford the spare bedroom penalty. Several disabled people we spoke to at the time found this approach both demeaning and exceptionally distressing as their pets were their only companions and they were faced with a choice of either getting rid of their pets or potentially being evicted from their homes. If local authorities are to retain DHPs we would wish to see Housing and revenue staff receiving disability equality and poverty awareness training to ensure that they treat disabled people (and other claimants) with due dignity and respect.

Could the administration of DHP applications be improved?

Please select one item
Ticked Yes
No
Please explain why.
Inclusion Scotland does not believe that the care components of DLA nor the daily living components of PIP should be taken into account as additional income in households applying for a DHP (we understand that the mobility components are already disregarded). This is because these benefits are paid to meet the additional costs of disability and are not provided to meet housing costs.

Does the guidance for local authorities on DHPs need amending?

Please select one item
Ticked Yes
No
Please explain why.
See above. if guidance says that the care and daily living elements of DLA and PIP can be taken into account as additional income we would like the guidance to be amended to exclude these benefits from consideration. Inclusion Scotland are also concerned that the LHA rules for Universal Credit specifically exclude additional rent costs arising from the servicing of adaptations to disabled and older people's homes (such as automatic door entry systems, Clos-O-Mat toilets, stairlifts, etc.). We believe that guidance should state that DHPs should be made available to disabled people and their families who have suffered losses in housing benefit/reduction in Universal Credit as a result of these changes.

Job Grant

What should the Scottish Government consider in developing the Job Grant?

What should the Scottish Government consider in developing the Job Grant?
Inclusion Scotland gives a very warm welcome to the proposal to give additional support to young job-seekers. If a Job Grant is to be introduced we believe that it should be an entitlement rather than a discretionary payment to avoid any possibility of post code lotteries developing in the award of grants. Inclusion Scotland further believes that the widest possible definition of unemployment or worklessness should be adopted to ensure that the maximum number of young people as possible qualify for support. At present only 40% of 18-24 year olds entitled to JSA are claiming the benefit. This is because a very high proportion have been driven away from the employability support that Jobcentres are supposed to offer by the punitive and unfair sanctions regime. Thus if entitlement to the Job Grant was tied to being registered as unemployed only a minority of young jobless people would be entitled to claim it. We would also urge the Scottish Government to ensure that the grant is tax free and is disregarded for means-tested benefits purposes.

Universal Credit flexibilities

Should the choice of managed payments of rent be extended to private sector landlords in the future?

Please select one item
Ticked Yes
No
Please explain why.
The same logic applies to tenants of private sector landlords as it does to tenants of social landlords. All the evidence is that when tenants received their housing benefit payments as cash it created the potential for the money to be used to deal with crisis situations or to pay off other debts. The tenant then fell into arrears and eventually could be evicted. Therefore if the tenant wishes to have their rent paid direct to their landlord, whoever that landlord is, then they should be allowed to exercise that option. However given that the private sector is less regulated than the social rented sector, we believe that there should be safeguards in place to ensure that tenants are not pressured into direct payment by their landlord. For example, direct payments might only be made if the landlord was registered under the landlord registration scheme.

Should payments of Universal Credit be split between members of a household?

Please select one item
Ticked Yes
No
Please explain why.
Like Engender, Inclusion Scotland believes that current UK policy, to pay joint awards to one individual in a couple, is both discriminatory and regressive. There is a great deal of evidence that income is seldom shared equally within households. Benefits paid direct to women in the household are more likely to be spent on children and the family whilst benefits paid to males in the household are not. However despite women being much more likely to shoulder the childcare responsibilities in a two parent family they will not necessarily receive either child tax credits or childcare costs under Universal Credit. Evidence from the Universal Credit roll out in Musselburgh suggests that nearly two thirds of lead claimants are men (64%) despite more than half the population being women. This policy will increase disadvantage amongst disabled women as they are already at greater risk of financial abuse and domestic violence (a great deal of domestic violence is centred around financial disputes within households). Under the UK system, recipients of a joint Universal Credit award will be required to nominate who receives the payment at the outset of a claim. This does not take account of the fact that currently the majority of jointly awarded ‘out of work’ benefits are claimed by men. It also assumes that couples own, access and control joint banks accounts on an equal basis despite overwhelming evidence to the contrary. Although the option to ask for alternative payment arrangements does exist on paper, this is not a realistic ‘choice’ for many women, especially those experiencing coercive control. Engender's briefing paper setting out these issues in detail was signed by twenty civil society organisations in Scotland including ourselves and we would commend it to you.

If Yes, please indicate if you think the default position should be:

Please select one item
Ticked automatic payments to individuals, with the option to choose a joint payment
automatic household payments, with the option to choose individual payments

If Yes, how do you think payments should be split? For example 50/50 between members of a couple or weighted towards the person who is the main carer if the claim includes dependent children?

If Yes, how do you think payments should be split? For example 50/50 between members of a couple or weighted towards the person who is the main carer if the claim includes dependent children?
Payments should be weighted towards the person who is the main carer. A means of identifying the main carers might be to ask who is the child benefit recipient in the household.

Do you have any other comments about how the Scottish Government’s powers over Universal Credit administrative flexibilities will be delivered?

other comments about how the Scottish Government’s powers over Universal Credit administrative flexibilities will be delivered
No.

Universal Credit housing element

Do you have any comments about the Scottish Government's powers over the housing element of Universal Credit?

Do you have any comments about the Scottish Government's powers over the housing element of Universal Credit?
Inclusion Scotland are concerned that service charges for maintaining and servicing property adaptations have been explicitly excluded from Universal Credit’s list of eligible service charges. These charges are currently eligible under the Housing Benefit system but have been excluded from Universal Credit, on the grounds that other systems are designed to pay for these. The DWP has however so far been unable to advise which other systems are designed to pay for a landlord’s costs in this area. Given that these costs have until now been eligible for Housing Benefit disabled tenants’ ability to occupy their homes is now going to be dependent on their ability to pay the charges necessary to ensure the maintenance and upkeep of the fixtures and fittings. Service charges support the costs of maintaining and servicing property adaptations such as clos-o-mat toilets (washer/dryer toilets), specialist baths, automatic door systems, through floor lifts, ceiling track systems and stair track systems. These are items in the property essential to a tenant‘s (or member of the tenant’s family) ability to live at home and to make use of property components essential for inhabiting the property. In some cases these are additional to standard components, and in others they are replacements for standard components which require more costly servicing and maintenance. We have been in contact with the College of Occupational Therapists about this issue as they were until now unaware of its implications. While Landlords cover costs for maintaining and servicing adaptations in different ways – some include in rent calculations, others levy service charges, no matter the approach, these are indisputably housing costs. Policy changes?: Inclusion Scotland and the Independent Living in Scotland project are urging that Universal Credit’s housing elements be amended to reflect this. Although the cost of such an adjustment is marginal to the social security system as a whole it is a very significant cost to the individual benefit claimants affected and also to those landlords which serve greater proportions of disabled and older people. There will also be an impact on social landlords rental income: For example for Horizon and Blackwood tenants, the omission of service charges from Universal Credit eligibility will affect around 682 households who currently receive housing benefit. The total value of the service charges currently eligible for housing benefit is in the region of £160,155 per annum, not an insignificant sum for small to medium size landlords. Impact on individual tenants: Individuals would lose between £7 and £26 per week depending on the type and number of installed adaptations. Added to other cuts in benefits and services being experienced by these groups, the impact of this change will be to increase debt and homelessness. Another very important medium to long term consequence of this change is that it will drive up the costs of borrowing for Housing Associations (particularly specialist adapted homes providers such as Horizon and Margaret Blackwoods). This is because Housing Associations are able to borrow at preferential rates on the basis of the certainty of future rent revenue. If instead tenants need to find the additional costs of servicing adaptations from other benefits, and there are cuts and additional costs pressures on those benefits already, then a significant proportion may go into rent arrears. That will incur interest penalties on existing loans and make future investment in adapted properties much more risky for Housing Associations and has the potential to drive specialist housing providers such as Horizon out of business. Conclusion: All of the above will have the effect of reducing the number of adapted and accessible homes being maintained and built which in turn will undermine and endanger Scottish Government’s policy goals in this area. In the event that the Universal Credit eligibility cannot be amended under devolved powers, we would urge that the provisions for Discretionary Housing Payments in Scotland be improved to clearly state that DHPs can be used to support service and maintenance costs of adaptations for disabled people.

Advice, representation and advocacy

What role[s] should publicly funded advice providers to play in the development of a new Scottish social security system?

What role[s] should publicly funded advice providers to play in the development of a new Scottish social security system?
Advice services including those provided by CABs and local authority welfare rights teams gain valuable insights into how benefits systems are working in practice. This means that the information they collect on problems can be invaluable in driving improvements in service provision. CAS gathers information from all of the Bureaux it supports and this can be an early indicator of emerging problems. Welfare rights officers gain great expertise in Social Security law and the problems posed by the system and then encountered by claimants. Their representative organisation, Rights Advice Scotland would be well placed to offer advice and guidance to Scottish Government. Second tier advice providers such as CPAG can also offer great assistance via their Early Warning System they are able to collate information about problems in the social security system. It is also important to acknowledge the role of DPOs in reaching/engaging with claimants, gathering their views view and getting feedback on the quality/ accessibility of services provided by advice agencies.

What steps need to be taken, to understand the likely impact of the transfer of the devolved benefits on publicly funded advice in Scotland?

What steps need to be taken, to understand the likely impact of the transfer of the devolved benefits on publicly funded advice in Scotland?
Inclusion Scotland do not feel qualified to comment on this issue. Only the publicly funded advice providers themselves are in a position to make informed comment. However it has to be acknowledged that the addition of an additional benefits provider on top of the existing DWP and Local Authorities (Housing Benefit, Council Tax Reduction Scheme and Scottish Welfare Fund) is likely to increase the complexity of the system for claimants and lead to some confusion in terms of accessing different parts of the system. This in turn will lead to increased work for advice and advocacy providers.

How could the transfer of the devolved benefits to Scotland be used to drive improvements in the provision of publicly funded advice?

How could the transfer of the devolved benefits to Scotland be used to drive improvements in the provision of publicly funded advice?
Inclusion Scotland believe that it is vitally important that publicly funded advice services become more accessible to disabled people. For example not all CABs or local authority welfare rights offices are wheelchair accessible. Many struggle to provide advice to deaf people because they have little or no access to BSL provision and some do not recognise that some disabled people not only want but need advocacy support to communicate their issues to others. Inclusion Scotland believe that much more needs to be done to link disabled people, especially those who are socially isolated, into existing advice and advocacy provision. Much more also needs to be done to identify gaps in provision and coordinating service provision so that all the disabled people who need it are able to access the advice and advocacy support that they require. We believe that there is a role here for DPOs/user-led organisations in working with advice providers or indeed in expanding advice provision into DPOs (e.g. Lothian Centre for Inclusive Living has welfare rights provision which is greatly valued by the disabled people who use it. There is also a paucity of expertise on disability issues in the advice sector. Unlike in England where there are several disability law centres there are none in Scotland. Centres of excellence such as law centres tend to drive up knowledge and expertise in both the advice and legal fields. Scotland is entirely lacking in such specialist expertise on disabled people's rights yet other equalities groups have been provided with such law centres (i.e. Child Law Centre, Ethnic Minority Law Centre, etc.). There is a very strong case for such a Disability Law Centre to be established in Scotland. In addition whilst there are "second tier" advice providers in several fields there is none expert on disabled people's rights. Again there is a strong case for a second tier advice provider in the field of disability rights to be funded to drive up advice standards and provide specialisd training to advice providers.

Do you think that Independent Advocacy services should be available to help people successfully claim appropriate benefits?

Please select one item
Ticked Yes
No
Please explain why.
The importance of advocacy services was raised by disabled people at all four of our engagement events but the event in Dundee focussed particularly on the role that advocacy plays in dealing with the social security system. Disabled people told us that advocacy supported had helped many of them and had been invaluable to some particularly some of the most vulnerable disabled people who would otherwise find it impossible to navigate their way through the Social Security system for example one disabled person said - “If I hadn’t been helped by advocacy I couldn’t have coped with the process”. Disabled people said that currently it is not easy to access the advocacy support required at the time or point of need. They also complained that the provision of advocacy support is extremely patchy and that access to advocacy services can vary greatly even within a local authority area. Several told us that because services are under-funded they are subject to rationing and the bar to qualify for advocacy support was therefore set too high. There is also currently insufficient advocacy support for all the disabled people who need it to accompany claimants to meetings with the DWP. Most of those who do currently qualified for advocacy support have learning disabilities, cognitive impairments (e.g. autism, brain injury) and/or mental health issues. However people with physical impairments and particularly those with communication impairments such as cerebral palsy and members of the deaf community told us that they too require advocacy support and yet find it extremely difficult to obtain. This is a gap in service provision that needs to be addressed. Disabled people also thought that they should be able to self-refer themselves to advocacy services rather than having to prove that they needed support. Inclusion Scotland believes that all disabled people who require advocacy support should be able to access it. Scottish Government should ensure that independent advocacy service exist in every local authority area and that those working in them are trained and accredited in both advocacy and the social security system and in accessibility issues. Disabled people stressed that it needed be made clear to staff in the new Scottish Social Security agency that people were entitled to bring advocacy workers with them to meetings. This should be a right established in regulations rather than guidance. Although advice agencies were well intentioned they lacked understanding of how conditions and impairments affected disabled people. They were also unable to provide staff to accompany disabled people to assessments. There is potentially a role here for DPOs who are uniquely placed to provide peer support to disabled people attending assessments. Disabled people themselves were often unaware of the existence of advocacy services and this was particularly true of those experiencing social isolation. People at our events suggested that staff in advice agencies and the wider Third Sector needed awareness training about the importance of advocacy services so that they could signpost disabled people to them and work better in partnership with them. Disabled people suggested that TV could also be used to advertise advocacy services to raise awareness amongst those who need them.

What next steps would you recommend that would help the Scottish Government better understand the likely impact of the transfer of the devolved benefits on independent advocacy services?

What next steps would you recommend that would help the Scottish Government better understand the likely impact of the transfer of the devolved benefits on independent advocacy services?
Whilst advocacy services are very highly valued by disabled people they are in inadequate supply - even for disabled people who have a statutory entitlement to them. Several local authorities do not fund advocacy services even though they have a statutory duty to supply them. Several other authorities have cut funding of advocacy services. A review of current and future provision is needed and increased resources put in place to ensure that disabled people who need advocacy support can access it in the new Scottish Social Security system. We would suggest that Scottish Government seek to co-produce any new service with the Scottish Independent Advocacy Alliance and its member organisations and DPOs - particularly those representing impairment groups with greater need for advocacy support such as People First, the Scottish Council On Deafness and VOX (Mental Health Foundation).

Complaints, reviews and appeals

Do you agree that we should base our CHP on the Scottish Public Services Ombudsman’s ‘Statement of Complaints Handling Principles’?

Please select one item
Ticked Yes
No
Do you agree that we should base our CHP on the Scottish Public Services Ombudsman’s ‘Statement of Complaints Handling Principles’
Inclusion Scotland supports the principle that the user should be at the heart of the process. Indeed there is nothing in the principles that we could disagree with and a great deal to commend them. The implementation of the principles should be independently monitored and improvement action taken to address shortcomings in service provision.

How should a Scottish internal review process work?

How should a Scottish internal review process work?
Inclusion Scotland are not opposed to the principle of internal reviews of benefits decisions taking place. As stated an internal review can provide an opportunity to correct mistakes at an early stage and thus avoid the lengthy, expensive and stressful need for an appeal. However we do not believe that the system of "mandatory reconsiderations" introduced by the DWP is an effective or fair system of reviewing decisions. At the time that mandatory reconsiderations were introduced 70% resulted in the DWP changing their decision in favour of the claimant. By March of this year that success rate had plummeted to 12% of all reconsiderations. Yet 58% of ESA appeals are successful. This suggests that a very large proportion of incorrect decisions go uncorrected prior to appeal and that justice is being denied to disabled people for very lengthy periods. We note that the UK Government Minister stated that the"....mandatory reconsideration process... could be completed relatively quickly. We would usually expect this to take around 14 days". There seems to be some difference between the expectation and the reality with over 26,000 people having waited six months or longer for the outcome of a mandatory reconsideration as of November last year. We agree with the disabled people that we engaged with that "mandatory reconsiderations" are not a genuine attempt to rectify mistakes but a delaying tactic by the DWP intended to cause prolonged stress and anxiety thus deterring people from exercising their right to appeal. Before mandatory reconsiderations were introduced disabled people retained some entitlement to their benefits whilst they awaited the outcome of a review and/or appeal. Now they are stripped of their entitlement until the appeal reinstates entitlement. In the meantime many are reduced not just to relative but absolute poverty forced to seek the assistance of foodbanks to be able to eat (over half of Trussell Trust foodbank users are there as a result of sanctions and benefit delays). Inclusion Scotland believes that where there was an entitlement to disability benefits prior to a negative assessment/decision then the claimant should retain entitlement whilst awaiting the outcome of an internal review. This would not only be fairer but should act as an incentive on the new social security agency's staff to arrive at a quick decision. Further the disabled people we engaged with were in total agreement that there should be strict legally enforceable time-limits on internal reviews of at a maximum one month to ensure that justice is not delayed.

What would be a reasonable timescale for the review to be carried out?

What would be a reasonable timescale for the review to be carried out?
The 14 days quoted by the UK Minister seems reasonable but some time should be allowed for the collection of additional information. Therefore a period of one month might be more practicable - but this should be a maximum, legally enforceable time limit (i.e. it should be stated as such in legislation) with compensation payable to the claimant if exceeded

Should a tribunal be used as the forum for dispute resolution for the Scottish social security system?

Please select one item
Ticked Yes
No
Please explain why.
Inclusion Scotland believes that the existing tribunal system should be preserved and used for hearing appeals on devolved benefits. We are extremely concerned that the DWP are currently consulting on moving to the great majority of appeals being paper based or appeals held by a chair sitting alone. The reason for including a representative with lived experience of disability and a health professional was to arrive at balance between application of the law (chair), medical knowledge and lived experience - all of which should be applied in determining entitlement to disability benefits. Disabled people are at an enormous disadvantage in challenging decisions that are manifestly incorrect. They may have impairments that restrict their ability to identify and relay crucial information; they may have to secure advocacy and advice support when it is in limited supply or even non-existent in their local area; they have to show that the DWP have applied the law incorrectly etc. In many instances the only assistance that the disabled people may be able to count on are their families or carers. In contrast the DWP representative has all the power and respect of an official of the state, a much better knowledge of social security law and its application and colleagues to assist in the preparation and presentation of the DWP's case. In such circumstances appeals to an independent tribunal with a balanced composition are a much needed counter-balance. Inclusion Scotland views attempts to limit disabled people's ability to take cases to tribunal as a fundamental attack on their human right to a fair hearing. Inclusion Scotland also believe that in the case of late appeals, claimants should have the opportunity to have a first-tier tribunal decide whether their appeal can be accepted late due to their having good cause. This would increase access to justice for many disabled people who, because of the complexity of the social security system and, in certain cases, their own impairments (e.g. learning difficulties, mental health issues) may not apply within the strict one month time limit.

If no, are there any alternative methods of dispute resolution that you think would be preferable to a tribunal?

If no, are there any alternative methods of dispute resolution that you think would be preferable to a tribunal?
None that allow people adequate access to justice.

How can we ensure that our values underpin the appeals process for a Scottish Social Security agency?

How can we ensure that our values underpin the appeals process for a Scottish Social Security agency?
The best way of ensuring that the values embodied in the proposed principles underpin the appeals process is for the appeals process itself to adopt a human rights based approach. That would include disabled people and other claimants having the right to be treated with dignity and respect at all stages and also having a right to a fair hearing including - • not being subjected to excessive delays • the right to confront their "accuser" (the Social Security Agency) and • to be present at any hearing that is determining entitlement

Are there any other values that you feel should be reflected in the design of the appeals process?

Are there any other values that you feel should be reflected in the design of the appeals process?
See above. The values should incorporate the rights included in the European Convention on Human Rights and the UN Convention on the Rights of Disabled People.

What do you consider would be reasonable timescales to hear an appeal in relation a decision on a devolved benefit?

What do you consider would be reasonable timescales to hear an appeal in relation a decision on a devolved benefit
Inclusion Scotland believe that the timescale for an appeal tribunal should be no longer than 3 months from the initial decision. The success rate at appeals on PIP decisions (between 65 - 70%) suggests that far too many assessments and initial decisions on entitlement are getting it wrong first time. The sheer volume of appeals and success rate undermines one of the key arguments in favour of face-to-face assessments - that they are necessary to validate whether someone meets the entitlement criteria. Given that thousands of disabled people are challenging the outcome of assessments and that more than half are doing so successfully it seems instead to be a spectacularly unsuccessful and expensive way of determining entitlement. Therefore we would suggest that the key methods of reducing the volume of appeals is to move back to a system of paper-based self-assessments and to greatly improve the standard of initial decision-making.

In order to ensure a transparent appeals process, what steps could be taken to ensure that those appealing fully understand and are kept informed at each stage of the appeals process?

In order to ensure a transparent appeals process, what steps could be taken to ensure that those appealing fully understand and are kept informed at each stage of the appeals process?
Similar work on language and communications should be done on those relating to tribunals as across the new Social Security agency itself. This would involve co-producing information materials and standard letters with disabled people and their organisations.

How could the existing appeals process be improved?

How could the existing appeals process be improved?
By removing the mandatory reconsideration stage.

Residency and cross-border issues

Should Scottish benefits should only be payable to individuals who are resident in Scotland?

Please select one item
Yes
Ticked No
Please explain why
Disability benefits should continue to be paid to disabled people living abroad but with the same conditions attached to their receipt as currently applies to the DLA care component, PIP daily living component and Attendance Allowance. Inclusion Scotland isare aware that this issue will be complicated and difficult to resolve if the UK is no longer part of the European Economic Area (EEA). Nevertheless there is at least the possibility of claiming or exporting these benefits to other EEA countries and Switzerland at present under the UK system and we cannot see why the Scottish social security system should be any less generous to disabled Scots living and/or working abroad (as receipt of DLA and PIP is not linked to employment status). We would also urge the Scottish Government to consider extending entitlement to the mobility components of DLA and PIP to disabled Scots living and/or working abroad. There should be also be a simplification of the rules relating to temporary absences from the UK. These rules are currently very complicated and often misapplied. In terms of defining entitlement to Scottish Social Security benefits we believe that the primary concern will not be Scots living “abroad” but those living in other parts of the UK. As such there may have to be some residency test based on the length of an applicant's residency in Scotland.

What are your views on the ‘habitual’ residence test currently used in the UK by DWP?

views on the habitual residence test currently used in the UK by DWP
Colleagues in CPAG and CAS tell us that in their experience the habitual residence test is poorly understood by DWP staff. This results in people being wrongly denied benefits to which they should be entitled. In addition the habitual residence is not the primary residence test for the areas of social security being devolved. Therefore we would agree with CPAG that it would be better to avoid employing it as a test and instead developing a simpler method of determining residence in Scotland. We would also agree with CPAG that the current ‘past presence’ test for UK disability benefits (which requires presence in the UK for 104 out of the last 156 weeks) is too restrictive and should be reconsidered. 

Are there other issues that the Scottish Government should take into account when it comes to residency rules?

other issues that the Scottish Government take into account when it comes to Residency rules
There are likely to be disputes about residence (particularly residence in other parts of the UK) as new benefits are introduced in Scotland. As the bulk of the benefits being transferred are paid to disabled people and their carers Inclusion Scotland are fearful that this could result in long delays to the payment of benefits that are essential to meet the extra costs arising from disability. For this reason we believe it is essential that the Scottish Government makes interim payments available to disabled people and carers whilst disputes about residence are being resolved.

Managing overpayments and debt

Could the existing arrangements for recovering social security overpayments be improved in the new Scottish social security system?

Please select one item
Ticked Yes
No
If yes, please explain your answer.
Disabled people at our events complained that the letters sent to them outlining their entitlement to disability benefits are far too long and complex. This increases the likelihood of an overpayment occurring as claimants have to wade huge amounts of unnecessary information to get to the parts telling them what their entitlement is and what responsibilities they have in relation to keeping the DWP informed of changes etc. Claimants are also less likely to challenge decisions that they do not understand. The Scottish Government should work with organisations such as CPAG, One Parent Families Scotland, the Poverty Alliance and ourselves to ensure that letters notifying people of their benefit awards and overpayment decisions are sent in clear (i.e. Plain English), brief formats. The letters should also explain how claimants can access more information about the relevant decision and how to challenge it. Inclusion Scotland also have concerns that although the DWP have discretion about whether to recover over-payments and at what rate, they seem to apply that discretion discretion in a fairly rigid manner. That is they fail to take into account individual circumstances such as whether an impairment (e.g. learning difficulties, mental health issues, communication and sensory impairments) may have affected the claimants ability to meet their responsibilities to notify a change in circumstances. The DWP also regularly applies the highest rate of recovery permissible without due regard to individual circumstances. This results in people being required to repay at a rate they cannot afford, resulting in extreme hardship, destitution, debt and homelessness. CPAG have also identified cases where the DWP is using powers to recover from benefits other than those which were overpaid because it allows larger amounts to be recovered. Inclusion Scotland calls on the Scottish Government to ensure that the new Social Security agency uses discretion on the rate at which repayments are recovered and that they take factors such as the client’s impairments, financial situation and risk of debt, destitution etc. into account. The agency should also be empowered to decide not to recover an overpayment, particularly where there has been no error or misrepresentation on the part of the claimant.

What are your views on the role that financial advice can play in the recovery of overpayments?

views on the role that financial advice can play in the recovery of overpayments
This is an area where a joined up approach would be beneficial to all concerned. Inclusion Scotland believes the Scottish social security agency should actively signpost/refer claimants to income maximisation, debt and welfare rights advice when they identify an overpayment which they intend to recover.

Fraud

Should the existing Scottish Government approach to fraud be adopted for use in our social security system?

Please select one item
Ticked Yes
No

If yes, should our existing counter-fraud strategy be adapted in any way?

Please select one item
Ticked Yes
No
Please explain your answer.
Disabled people at our events told us that they were robbed of their dignity and respect by constantly being treated by DWP staff as though they were "at it". This happened despite the fact that the rate of fraud in relation to disability benefits is very small (0.5%) and in total benefits claimed fraudulently represent just 0.7% of the total UK social security budget. We would question why 995 honest disabled people need to be treated as fraudsters because 5 non-disabled people might make fraudulent claims. In fact far more money (1.3% of the budget) is lost due to official and claimant error and it would seem more cost efficient to instead tackle official error. Inclusion Scotland would be very concerned if the same attitudes towards claimants was carried over into the Scottish social security system. Fraud should certainly be tackled but not at the expense of the dignity and respect due to the overwhelming majority of claimants. Inclusion Scotland believes that the counter fraud strategy therefore needs to be adapted to reflect the reality of the scale of fraud rather than the paranoia and stigmatisation of all claimants promoted by the media. We would agree with CPAG that changing the tone and the emphasis of the guidance would help to ensure that claimants are not discouraged from claiming benefits or reporting a change in circumstances due to fear of being accused of fraud. The Scottish Government should also consider how safeguarding procedures can be put in place to protect disabled claimants who may have failed to meet their responsibilities because of their impairments rather than any fraudulent intent.

How could the new Scottish social security system ‘design out’ errors and reduce the potential for fraud at the application stage?

How could the new Scottish social security system ‘design out’ errors and reduce the potential for fraud at the application stage?
We are concerned that this question, like the UK Government's use of statistics, conflates "error" and "fraud". These are two entirely different things. Therefore in order to design out "fraud" and "error" different approaches may be needed. For example simplifying and improving the application process for disability benefits would help reduce the potential for claimant (and official) error. Making forms more accessible and only asking relevant questions (rather than repeatedly asking for the same or similar information) would make them more understandable to claimants. Claimants also need to be provided with clear, accessible information about the conditions of benefit entitlement and their on-going responsibility to notify the Social Security agency of changes in their impairment or condition. These responsibilities should be explained to them in an open, non-threatening way both when they apply and after they are awarded benefits To reduce fraud and error existing information held by Scottish Government and others could be used to cross check applications for inconsistencies or changes (subject to data protection rules) - though claimants should always be given the opportunity to explain such inconsistencies.

Should the Scottish social security system adopt DWP’s existing code of practice for investigators?

Please select one item
Ticked Yes
No
Please explain your answer.
The Scottish social security system should adopt the DWP’s current code of practice. The DWP’s code or practice, is based on PACE (the Police and Criminal Evidence Act 1984), which provides greater protection to claimants and investigators and clearly defines the range of powers available to investigators.

What are your views on the existing range of powers granted to investigators?

What are your views on the existing range of powers granted to investigators?
They seem adequate for purpose.

What are your views on conducting interviews under caution?

What are your views on conducting interviews under caution?
See above on safeguarding procedure for disabled people and others who may be vulnerable in such situations.

What improvements could be made around conducting interviews under caution?

What improvements could be made around conducting interviews under caution?
See above on safeguarding procedure for disabled people and others who may be vulnerable in such situations.

Should the Scottish Government retain the same list of offences which people can be found guilty of in terms of social security fraud?

Please select one item
Yes
Ticked No
Please explain your answer.
The offence of “Failing to notify a change in a person’s circumstances, when the person is aware that the change affects another person’s entitlement” is problematic and causes concern for advisers and advocacy workers. While case law is clear that an adviser will not commit such an offence as long as they have made a claimant fully aware of their duties and do not contribute to any failure, it remains an area of concern and worry for advisors. The offence should be redrafted to make its intent clearer.

Should the Scottish Government impose the same level of penalties for social security fraud as are currently imposed?

Please select one item
Yes
Ticked No
Please explain your answer.
Inclusion Scotland does not have any concerns about the level of criminal penalties imposed. We like CPAG are concerned by the use of administrative penalties ‘as an alternative to prosecution’ and/or ‘civil penalties’. Neither of these approaches require fraud to be proven and there is some doubt that such administrative penalties are in line with human rights obligations. Claimants, even when innocent of fraud, may also feel pressurised into accepting them rather than facing the stress and embarrassment of a court appearance. As such, we would ask the Scottish Government to consider whether administrative penalties should be retained under a new system based on principles of dignity, respect and fairness. We would rather see the Scottish Government concentrating its efforts and resources on prosecuting cases which can be proven in court instead.

Safeguarding your information

Should the existing Scottish Government approach to Identity Management and Privacy Principles be adopted for use in our social security system?

Please select one item
Ticked Yes
No
Please explain your answer.
It seems a sensible and balanced approach.

If yes, should our existing Identity Management and Privacy Principles be adapted in any way?

Please select one item
Ticked Yes
No
Please explain how.
Many carers at our engagement events, and also staff from advice and advocacy services, told us that they regularly experienced difficulties in getting the DWP to speak to them rather than the disabled person. Disabled people with communication impairments, learning difficulties, autism and mental health issues found this very distressing as it was directly contrary to their expressed wishes. DWP staff often insisted on doing this on the basis that they were protecting the disabled person's privacy. The Scottish Public Service Ombudsman's Office have procedures in place which enable carers, advice and advocacy workers to speak on the disabled person's behalf. The Scottish Government should adopt similar procedures to remove unnecessary barriers being placed on those attempting to advocate on disabled people's behalf.

Who do you consider should be consulted in regard to the Privacy Impact Assessment and what form should this take?

Who do you consider should be consulted in regard to the Privacy Impact Assessment and what form should this take
Organisations representing users of the Social Security service including Disabled People's Organisations, Disability Charities, Carers organisations, CAS, CPAG and OPFS as well as the Information Commissioner.

What are your views on privacy issues that may affect the new agency?

What are your views on privacy issues that may affect the new Agency?
There is a great deal of sense in sharing information which would be helpful in establishing entitlement to benefits but this must only be done with the specific consent of the individual involved and they must have access to the information to be shared, be informed of who it will be shared with (and who not), and authorise sharing before it is shared

Do you perceive any risks to the individual? What solutions might be considered to mitigate against these?

What solutions might be considered to mitigate against these?
Individuals may feel pressurised into giving consent by their need to obtain benefits. It would also be highly prejudicial to the way that the new Social Security agency is perceived should there be any breach of confidentiality arising from information sharing. Inclusion Scotland are certain that Scottish Government is aware of these risks and hope that they will act to minimise them. We would recommend that people are made fully aware of the implications of sharing personal info, how it could be used and by whom. There are also ethical considerations that need to be taken into account in developing a "sharing of information" policy for the new agency which should be consulted on further.

Would you support strictly controlled sharing of information between public sector bodies and the agency, where legislation allowed, to make the application process easier for claimants? For example, this information could be used to prepopulate application forms or to support applications, reducing the burden on applicants.

Please select one item
Ticked Yes
No
Please explain your answer.
See above - as long as this was done with their full knowledge of what, how and with whom it will be shared, and any possible adverse implications, and with the consent of the individual concerned we can see no valid objections to the sharing of information which would help establish entitlement.

Would you support strictly controlled sharing of information between a Scottish social security agency and other public sector organisations (for example local authorities) to support service improvements and deliver value for money?

Please select one item
Ticked Yes
No
Please explain your answer.
We really require a definition of ‘strictly controlled’ to make a meaningful judgement on what this entails. For example by whom would it be ‘strictly controlled’ and what redress would be available to individuals if that control was breached. We would again emphasise that this must always be with the specific consent of the individuals whose information is being shared.

What are your views on having the option to complete social security application forms online? Can you foresee any disadvantages?

What are your views on having the option to complete social security application forms online? Can you foresee any disadvantages?
In principle Inclusion Scotland are in favour of this option as it will assist some disabled people in making claims when they have physical access difficulties or anxiety issues that make dealing directly with others difficult. However we are concerned that a digital first approach is to be used. We believe that this seriously underestimates the barriers to disabled people making online claims and may result in insufficient planning and resources being put in place for the majority of applications still being made on paper. In recent (2011/12) DWP research, 45% of participants said that they would need support to claim online. This could mean that tens of thousands of disabled people, and other claimants, seeking assistance in completing their claim forms online might make huge demands on advice and advocacy services and divert staff away from their core work, It also has to be borne in mind that a very large proportion of disabled people do not have access to or use the internet . According to the latest Scottish Household Survey 35% of adults with an impairment or long term health condition do not use the internet at all. This is age related but so too is disability benefits receipt. However the 35% figure almost certainly under-estimates the proportion of disabled people who would find it extremely difficult or impossible to fill in an online application form without assistance. This is because there is a huge difference between using a tablet or mobile phone to access online games or YouTube and the online literacy required to complete a lengthy claim form for benefits. Functional illiteracy is a known issue in Scotland and is highest amongst low income households (i.e. those most likely to be claiming benefits). Those with learning difficulties, both congenital and acquired (e.g. through brain injury, oxygen deprivation at birth, etc.) and those with learning impairments (such as dyslexia) are amongst those most likely to have no educational qualifications and thus be in the functional illiteracy grouping. But even those disabled people with physical/sensory impairments and no learning difficulties are more likely to leave school with no qualifications. Disabled people are more than twice as likely as non-disabled people to have no educational qualifications (26% as opposed to 10%). We would also suggest that it is likely that internet usage is least amongst those disabled people with the higher levels of impairment necessary to become entitled to benefits - i.e. the people most likely to make a claim to benefits are least likely in terms of income, literacy, physical, cognitive and sensory impairments and mental health issues to be able to make their claim online. None of this should prevent an online application being offered but planning should be more realistic about how many disabled people will be able to exercise that option.

What are your views on the new agency providing a secure email account or other electronic access to check and correct information for the purposes of assessing applications (noting that any such provision would need to be audited and regulated so that the security and accuracy of the information would not be compromised)?

What are your views on the new agency providing a secure email account or other electronic access to check and correct information for the purposes of assessing applications
Inclusion Scotland would be supportive of such an option.

Uprating

What are your views on the best way to ensure that devolved benefits keep pace with the cost of living?

What are your views on the best way to ensure that devolved benefits keep pace with the cost of living
Inclusion Scotland believes that benefits, including disability benefits should be uprated annually in line with the Retail Price Index (RPI) and not the CPI. The RPI is a much more accurate reflection of how inflation affects low income families than the CPI. The UK Government moved to using the CPI for uprating purposes to reduce the benefits bill. Use of the CPI for uprating purposes on a long term basis will result in wealth inequalities growing as families whose income wholly or partially depend on benefits fall further and further behind the incomes of more affluent households. Additionally analysis by CPAG and others shows that the switch from use of the RPI to the CPI and the freeze on the uprating of certain benefits will result in more families and children moving into poverty. (For example: Uprating and the Value of Children’s Benefits, Policy Note 2 http://www.cpag.org.uk/sites/default/files/CPAG-Uprating-childrens-benefits-policy-note-Dec-14.pdf) Inclusion Scotland understands that using the RPI rather than the CPI will have cost implications but if the Scottish Government simply mimics the UK Government's move to using the CPI it will be making it much harder, if not impossible, to achieve its own targets to reduce child poverty.

Are there any devolved benefits in particular where uprating based on a measure of inflation would not be effective? If so, please explain which benefits and why.

devolved benefits in particular where uprating based on a measure of inflation would not be effective? If so, please explain which benefits and why
The costs of funerals seem to be far outstripping any normal measure of inflation and this needs to be reflected in Scottish Government policy. Inclusion Scotland believes that greater regulation of the funeral services sector is needed as well as increases in Funeral grants.