Disability and Carer Benefits Expert Advisory Group - beyond a safe and secure transfer: advice

1. Purpose of disability and carer benefits

Currently, the Scottish Government states the purpose of disability benefits is^[6]:

• Child Disability Payment (CDP): This assistance aims to support children and young people with disabilities, as well as their families, to mitigate the increased costs they incur as a result of having a disability or long-term condition.
• Adult Disability Payment (ADP): This assistance aims to support working age people with a disability or long-term ill-health and to mitigate some of the extra costs they incur as a result of having a disability or long-term condition.
• Pension Age Disability Payment (PADP): This assistance supports older people who have a disability that means they need assistance with looking after themselves, or supervision to keep them safe.

The stated purpose for carer benefits is^[7]:

• Carer's Assistance: To help carers protect their health and wellbeing, so they can continue to care if they wish, and have a life alongside caring. Carer benefits, while not a payment for care, can help achieve this.

We largely agree with the purposes stated, as they acknowledge that disabled people face additional barriers and there is a cost associated with systemic barriers created by the rest of society. However, we do believe some adjustments should be made. Disability and carer benefits also act as entitlement to a number of other benefits and schemes covered in the 'Passported benefits' section later in this document.

Recommendation 1: Changes are needed to express the intent of improving support over time in order to advance equality and progressively realise rights for disabled people and carers of all ages.

Recommendation 2: There should not be any changes made to the definition or purpose of disability and carer benefits that result in a constraint on investment into these benefits.

1.1 Consistency

In the current stated purposes, where CDP 'mitigates the increased costs', ADP 'mitigates some of the extra costs', PADP 'supports older people'. This presents differences in the costs that disability benefits are intended to address depending on the age of the individual entitled.

As is currently in the Carer's Assistance purpose, enhancing health and wellbeing should be replicated in the purpose of the disability benefits. This is more appropriate than talking about supervision and safety, regardless of age.

We believe it is of concern that the Pension Age Disability Payment purpose currently contains the word 'supervision'. Whilst supervision may be the appropriate word choice when discussing specific impairments of older people such as dementia and Alzheimer's disease, these conditions do not exclusively affect those of pension age, and therefore from a human rights perspective consistency of language is needed. 'Care-giving support' should be considered as a replacement, which for some may be intensive or around the clock. In addition, the current stated purpose of PADP does not contain any reference to the extra costs of disability. This is logically flawed and suggests a presumption that these costs either stop at pension age or are mitigated by care-giving.

Recommendation 3: There should be further clarity and consistency in the defined purpose of all disability benefits, particularly on the costs they will address, with any inconsistencies justified.

1.2 Language

This Group supports the transformation of the system to reflect a human rights-based model of social security. The language we use is important. Although language won't solve the problems of the current system, it would be a step towards changing the emphasis to reflect that societal barriers disable people who have impairments.

The social model of disability explains that individuals are disabled by the barriers they face, rather than their impairments themselves.

We recognise that although the basis of disability benefits is compensatory in the face of economic and societal barriers, the real focus should be on reducing the disabling experience in the first place by improving the way the Scottish economy and society are designed, changing the role in the long term for compensatory benefits. This should be something that is continually revised.

Recommendation 4: The language used in the Scottish Government's purpose of disability and carer benefits should be updated to reflect the social model of disability and a human rights-based approach to social security.

For example, suggested re-phrasing to the stated purposes of disability benefits could be as follows:

• Child Disability Payment (CDP): This assistance aims to support disabled children and young people, as well as their families, to mitigate the increased costs they incur as a result of being disabled or having long term ill-health.
• Adult Disability Payment (ADP): This assistance aims to support working age disabled people or those who have long term ill-health and to mitigate the increased costs they incur as a result.
• Pension Age Disability Payment (PADP): This assistance aims to support older disabled people or those who have long term ill-health to mitigate the increased costs they incur, enabling them to look after themselves or be supported to keep safe.

These changes better reflect a social model of disability and are in keeping with our fourth call to action. Unfortunately, they do still demonstrate medical model language which does not focus on the barrier to removal, but rather locates disability intrinsically with disabled people - as opposed to being about barriers and discrimination. The above suggested language changes still align with the current descriptors which we would like to see reviewed.

1.3 Poverty reduction and adequacy

There should be further clarity within the purpose and definitions used that the costs intended to be covered by these benefits are to compensate eligible individuals. There are a variety of additional direct costs to consider with variability between different impairment groups (e.g. purchasing a wheelchair, heating and energy, other housing costs, premiums on items for people with disabilities, extra laundry/washing machine energy costs and special software like JAWS for those with visual impairments). There are also secondary reasons, such as those associated with reduced access to education, employment and discrimination. This presents a poverty of opportunity which is currently not well measured. The Family Fund^[8] and CIRCLE project at University of Sheffield^[9] present initial methodologies used to gather data in this area.

Recommendation 5: Existing and further research should be gathered to better understand the needs of carers and disabled people and the additional costs that they have.

Recommendation 6: Additional costs should be defined as the costs of overcoming barriers, enabling participation in family, community and economic life as human rights, meeting the commitment set out in the Social Security Charter and the rights enshrined in the UNCRPD.

It is well established and widely known that there are direct links between poverty and disability.

This line graphs compares the proportion of people in relative poverty after housing costs. There are two lines, one for 'in household with disabled person(s)' and the other for 'in household with no disabled person(s).

In 2017-20, the latest data release, the poverty rate after housing costs for people in households with a disabled person was 23% (500,000 people each year). This compares with 17% (540,000 people) in a household without disabled household members.^[10]

The poverty is higher for individuals in households with a disabled person when disability-related benefits are not included in the household income. After housing costs, the poverty rate was 29% (640,000 people each year) for people living with a disabled household member, and 16% (500,000 people) for those without.

This line graph compared the proportion of people in relative poverty after housing costs, with disability benefits removed from household income. There are two lines, one for 'in household with disabled person(s)' and the other for 'in household with no disabled person(s).

This Group believes that even in the cases of non-means tested benefits, the secondary links between disability and poverty should be recognised. For example, individuals could be in employment and still be financially disadvantaged compared to non-disabled people in employment. Examples of additional costs for working disabled people include contributing towards Motability and more expensive equipment such as ergonomic wheelchairs, social care charges and other essentials which contribute to disable people's poverty.

As outlined in the 2018 Act and the Charter, Scottish social security powers should contribute towards reducing poverty in Scotland. We know that disabled people and carers are more likely to experience poverty, and many more would be in poverty if they did not receive financial assistance. However, there are significant challenges in terms of both adequacy (benefits that don't pay enough to reduce poverty) and take-up. We would wish to see greater data transparency and commitment to action on both fronts, but we would not wish to stipulate that the purpose of these benefits is solely to mitigate poverty.

Recommendation 7: The Scottish Government should continue to make clear that social security benefits will contribute to reducing poverty.

There is other support in place for other costs, for example, Access to Work which is a government scheme supporting disabled people to stay in work through practical support which can pay for transport, support workers, adaptations or communication support. This comes with the acknowledgement that there are significant flaws and gaps in these types of support.

This Group believes that more work should be done to understand the long-term and lifetime costs experienced by disabled people and carers. This should identify gaps in evidence and information, including any lost income and lost opportunity. Disability is cumulative and intersectional^[11] and is associated with more barriers over time. This research should be conducted on a continual and ongoing basis. Asking disabled people to quantify the costs associated with their impairment is fraught with difficulty as many go without items, aid and services they need due to poverty. We therefore recognise that this could be complex, but it is not impossible.

In addition to adequate social security benefits, additional funding for specific items from other parts of the 'system' should be available. For example, an expanded Independent Living Fund to support disabled people with high support needs.

Recommendation 8: Disability and carer benefits should be increased to adequately meet their stated purpose.

1.4 Poverty Action Plans

We recognise the links between disability, providing unpaid care and poverty. However, this poverty cannot be addressed by disability and carer benefits alone. Interdependent and connected poverty action plans should be set out for disabled people and carers.

These should:

1. identify the causes and main drivers of poverty for disabled people and carers;

2. highlight the issues and barriers that these groups face;

3. explore ways to overcome them through direct and secondary costs;

4. set ambitious poverty reduction targets; and

5. confirm a delivery plan to achieve them.

Other examples include the Scottish Government's Disability Employment Action Plan^[12] with commitments to reduce the employment rate gap and the Tackling Child Poverty Delivery Plan^[13] with long-term plans for parental employment opportunities, strengthened social security and support to reduce household costs.

To truly lift people out of poverty, the purpose should be people living fulfilling lives, participating in opportunities with support needed, whether they are in work or not, and for longer with increased self-worth and well-being.

Recommendation 9: The Scottish Government should commit to developing and implementing a Disability Poverty Action Plan and a Carer's Poverty Action Plan.

1.5 Passported benefits

Entitlement to disability and carer benefits can act as entitlement to other benefits or schemes. Examples include:

1. payments provided by the DWP or HMRC;

2. payments and other support from local authorities;

3. reductions in Council Tax;

4. help with the costs of transport and utilities;

5. access to some forms of charitable support; and

6. additional payments from Social Security Scotland.

Both ad hoc and formal data sharing arrangements have allowed claimants to access these further supports. Now that in Scotland disability and carer benefits are paid by Social Security Scotland this has added an additional layer of complexity to these 'passported' entitlements. This has the potential to create difficulties for claimants.

The first issue is equivalence - will an entitlement to a disability or carer benefit paid by Social Security Scotland allow the claimant to access the same support as entitlement to the comparable DWP benefit? This is important for the statutory additional benefits provided by the DWP, HMRC and local authorities, but also applies to the wide range of other supports that are available. We supported the 'safe and secure' transfer process to maintain broad equivalence, and to allow this continued equivalence.

After a safe and secure transfer, the Scottish Government may make changes to the eligibility and entitlement criteria to disability and carers benefits which may affect this equivalence. It is important that claimants in Scotland can continue to access these supports, but also that the Scottish Government is able to make changes to these benefits in Scotland. The Scottish Government must work with a wide range of stakeholders to ensure these passporting arrangements continue, and any resultant impact on reserved benefits is fully understood.

Secondly, it is important that it is as easy as possible for claimants to get all of the additional supports that they are entitled to. At present a claimant may have to make many different and separate claims to get these different supports, which is both administratively ineffective and creates a barrier to take-up. There is an opportunity to ensure that data is shared and, where possible, applications automated to reduce administrative costs and boost take-up of these additional provisions towards income maximisation. This is covered in more detail at the 'Full integration of services and advice' section later in this document. The Scottish Government could also explore what further support could be made available to those entitled to disability and carers benefits.

Recommendation 10: The Scottish Government should agree a Memorandum of Understanding between Social Security Scotland, the DWP and HMRC so that, when considering changes to the eligibility criteria for disability and carers benefits, the impact on reserved benefits can be understood and detrimental consequences are prevented.

Recommendation 11: Social Security Scotland should have the necessary data sharing agreements in place to efficiently passport benefits. This should make the process as easy as possible for claimants.