Learning Disabilities, Autism and Neurodivergence Bill: consultation

Section 9: Social Security

What we heard

Social security is a human right and is essential to the realisation of other human rights.^[223] None of us know when we might need it. It is a shared investment to help build a fairer society, together. Social security is key for disabled people, including neurodivergent people and people with learning disabilities, to gain independence from families, boost their social participation and support their ability to live with dignity. It can enhance the productivity, employability and economic development of disabled people. And, ultimately, help to tackle inequalities and allow every person in Scotland to live with dignity, fairness and respect.

We know that people with learning disabilities and neurodivergent people are less likely to be in employment and are therefore more likely to need social security support. For those who are in employment, we know that they may also need social security support if they are unable to work full time, or to help with the additional costs of being disabled.

Neurodivergent children and young people, and children and young people with learning disabilities, and their families, may also need support with the additional costs of their conditions.

The latest full year data estimated the employment rate for disabled people aged 16 to 64 at 50.7 per cent. This was significantly lower than the rate for non-disabled people (82.5 per cent), and represents a disability employment gap in Scotland of 31.9 percentage points.^[224]

It is estimated that employment rates are 4-8% for people with learning disabilities^[225] and 29% for autistic people^[226], compared with Scotland's national employment rate of 82.5% for non-disabled people and 50.7% for disabled people.^[227] The Office for National Statistics has also reported that the employment rate for 'severe or specific learning difficulties' is 26.2%.^[228] The National Autistic Society has said that 77% of unemployed autistic people want to work.^[229]

What did LEAP think?

• There shouldn't be a limit of 16 hours per week of employment, after which certain social security benefits are taken away. This limit can make it very difficult to find employment.
• Learning disabilities, and other neurodivergent conditions such as autism are lifelong conditions. It is undignified and stressful having to be re-assessed for certain benefits. This shouldn't happen.
• The social security rules and processes should either be simpler, or more support should be provided to help people understand their right to social security and how to apply.
• The eligibility criteria for disability payments does not seem to be right. In particular, there is uncertainty about whether a diagnosis of a neurodivergent condition, such as autism, ADHD or FASD, or a diagnosis of learning disabilities, is needed. It was thought that a diagnosis should not be needed because there can be long waiting times for diagnosis.
• Transitions into and out of employment need to be managed better – without cliff edge losses of certain benefits and quick restarting of those benefits is required if employment doesn't work out which can often be the case.
• The barriers to accessing and understanding rights to social security need to be better understood and addressed. Better communication and information are needed.

Where we want to get to

• Our social security system supports people in line with the values of dignity, fairness and respect.
• Clear information and guidance is available on the right to social security and how to apply, including for people without a formal diagnosis.
• People who are eligible for social security benefits are provided with proactive support wherever possible, and people who are eligible receive the benefits they are entitled to.
• There are better transitions into and out of employment.

What happens now and what can we do about it?

International Human Rights

Social security is a human right that is protected by a range of international human rights laws and standards:

• Council of Europe Code of Social Security
• Article 12, European Social Charter
• International Labour Organisation Convention No. 102
• Article 9 The International Covenant on Economic, Social and Cultural Rights (ICESCR)

As noted in the introduction we are progressing a Human Rights Bill for Scotland as well as the United Nations Convention on the Rights of the Child (UNCRC) (Incorporation) (Scotland) Bill, to incorporate a wide range of internationally recognised human rights belonging to everyone in Scotland into Scots law, within the limits of devolved competence.

The different types of Social Security Benefits

Some social security benefits are delivered in Scotland by Social Security Scotland. However, the majority are delivered by the UK Government, through the Department for Work and Pensions (DWP).

The Scotland Act 2016^[230] gave the Scottish Government additional powers, including to deliver certain benefits, and provides powers to top up certain reserved benefits (those that the UK Government delivers). In addition, it gave the Scottish Government powers to create certain new benefits. The Social Security (Scotland) Act 2018 ("2018 Act")^[231] sets out the framework for most of the benefits to be delivered that the Scottish Parliament has so far legislated for. There are other devolved forms of social security assistance that are delivered outwith the 2018 Act powers, for example, Best Start Foods under regulations made under the Social Security Scotland Act 1988, and grants payable from the Scottish Welfare Funds under the Welfare Funds (Scotland) Act 2015.

Our Charter^[232] sets out what people should expect from the new social security system and how we will take a human rights based approach. It was created with people with lived experience and not for them, and a defining feature of our human rights approach to social security is that every aspect of the new system has been designed together with the people who know the system best – those who access and rely on services.

Social Security Scotland currently delivers 13 different benefits in Scotland, including:^[233]

• five Family Payments, including the Scottish Child Payment;
• two Disability Benefits: Adult Disability Payment (ADP) and Child Disability Payment (CDP);
• two Carer Benefits;
• two Heating Benefits;
• Funeral Support Payment; and
• Job Start Payment.

ADP and CDP are not means-tested. This means that they are paid regardless of a person's income or financial position, so employment status is not taken into account. ADP will not stop if a person works over 16 hours, or enters into employment. CDP will not stop if a child or young person's parent or carer's employment or income status changes, of if the young person enters into employment.

Carer Support Payment, which will replace Carer's Allowance in Scotland, has limits on the amount carers can earn while receiving the benefit, as an income replacement benefit. Earnings rules for the benefit will mirror Carer's Allowance on launch to avoid a 'two tier' system which would disadvantage some carers but we are considering feedback from carers, support organisations, and our previous public consultation on changes we could make in future to provide more flexibility for carers who are able to, and want to, take on paid work alongside caring.

However, the key social security benefits that neurodivergent people and people with learning disabilities are likely to rely on are the responsibility of the UK Government. This includes Income Based Employment and Support Allowance (ESA), New Style ESA, Universal Credit and Tax Credits. The DWP is, however, in the process of migrating people from Income Based ESA and Tax Credits to Universal Credit. This process is due to complete for Tax Credits by 2025 and ESA by 2029.

New Style ESA can only be awarded if a person is working less than 16 hours, or they do not earn more than £167 a week and have paid class one or class two National Insurance contributions in the last two full tax years before a claim is made.

No new claims can be made for income based ESA and interested persons will be signposted to claim Universal Credit.

Universal Credit can be awarded even if a person works over 16 hours a week. It is, however, means-tested.

Working Tax credit can only be awarded to a disabled person if they already get Child Tax Credit and work at least 16 hours.

Overall, this means that some of the concerns raised by the LEAP cannot be addressed by the Scottish Government. This includes concerns relating to: the 16 hours limit of employment per week; cliff edge loss of benefits when entering employment; and concerns around being able to quickly reapply for benefits if employment doesn't work out.

We continue to call upon the UK Government to make changes to reserved benefits which impact on people in Scotland. For example, calling on the UK Government to legislate for an essentials guarantee to be applied to the rates and uprating of reserved benefits. Doing so would link the rates of benefits to the cost of essential items such as food and fuel, as well as ensuring that no-one's benefit would fall below this level as a result of any caps or limits, government debt or sanctions.

As well as the implementation of an essentials guarantee, we are currently calling on the UK Government to make the following changes to Universal Credit:

• abolish the two child limit;
• end the widespread use of sanctions, following clear evidence that they do not work;
• scrap the young parent penalty which ignores the reality that, regardless of age, housing, food and utilities cost the same for everyone; and
• replace advance loans with non-repayable grants.

Adult Disability Payment (ADP)

Following a phased pilot rollout, ADP opened for new applications across Scotland in August 2022. For people in Scotland who currently receive Personal Independence Payment (PIP) or Working Age Disability Living Allowance (WADLA) through the DWP, their payments are automatically transferring to Social Security Scotland without interruptions to people's payments. Our ADP policy position paper was published in March 2022.^[234]

Our priority is the safe and secure transfer of these payments, which means that we are not immediately making fundamental changes to the existing benefit structure or rules. However, we have made a number of improvements to provide disabled people with a far more positive experience compared to PIP.

ADP is not means-tested and is not taxed. It will also rise with inflation. On 01 April 2023, ADP was increased by 10.1% in line with inflation. It can be a passport to other types of support, such as Blue Badge, Housing Benefit, Carer's Allowance, Universal Credit and exemption from the benefit cap.

ADP has been co-designed with stakeholders and disabled people to ensure that the values of dignity, fairness and respect are embedded throughout. The application process was designed with individuals and disability organisations so that as many people as possible can understand, apply for and receive the benefits they are entitled to. Applications can be made in a way that suits people best: online, by post, over the phone or face-to-face. Local delivery staff are available to provide one-on-one support to disabled people throughout the application process, at a time and place which is most suitable for the person applying.

There are no DWP style assessments with medical examinations, such as asking clients to 'touch their toes'.

Disabled people are asked, where possible, to provide one piece of supporting information from a professional with their application. In order to make the application and review process as easy as possible for people, Social Security Scotland can obtain supporting information from professionals on the person's behalf. Social Security Scotland also accepts supporting information provided by third sector organisations who support an individual in their day-to-day life. Disabled people are encouraged to apply for disability assistance even if they do not have any supporting information to hand.

People can access Short-term Assistance while they are challenging a decision after a review to reduce their entitlement, which does not need to be repaid if their review is unsuccessful.

Eligibility is not based on a person's diagnosis of a particular condition. Instead, it is based on the impact a person's condition has on their daily life. This approach means that individuals who face barriers accessing a diagnosis or input from medical professionals will not be disadvantaged within the social security system.

We have introduced indefinite awards for people with the highest level awards where they have needs which are highly unlikely to change. This will help to avoid the stress and anxiety associated with reviews while providing long-term financial security to people. Indefinite awards will support people to lead their lives more independently and fully.

ADP as it currently stands does not represent the limit of our aspirations for disability assistance in Scotland. We are in the process of establishing an independent review of ADP to consider what further changes and improvements could and should be made in the future.

The independent review will examine the current eligibility criteria and people's experiences of the first year of ADP. The review will make recommendations ensure the benefit continues to meet the needs of disabled people, in accordance with the principles set out in the 2018 Act. The Chair will be independent of Government and will also consider the most appropriate ways of engaging with a wide variety of audiences. The independent review will secure the input of disabled people and stakeholders, with opportunities for participation throughout.

Child Disability Payment (CDP)

CDP was launched in Scotland in November 2021 and is available to children from 3 months to 18 years old who have care and/or mobility needs as a result of disability. CDP is designed to mitigate some of the additional costs of caring for a disabled child or young person. Our CDP position paper^[235] was published in February 2020.

CDP was co-designed with disabled people and other stakeholders to ensure that our values of dignity, fairness and respect are embedded throughout. It was the first benefit anywhere in the UK where applicants could apply online, as well as by phone, post or face-to-face.

It is not means-tested or taxed and will rise with inflation. On 01 April 2023, CDP was increased by 10.1% in line with inflation. It can be a passport to other types of support, such as a Blue Badge, Housing Benefit, Carer's Allowance, Child Tax Credit, Universal Credit and exemption from the benefit cap.

Whilst over 80% of people surveyed told us that CDP helped make a difference to their lives^[236], we are continuing research to look for ways to improve and enhance the service for the people of Scotland. As described in the Evaluation Strategy^[237] for devolved disability benefits, a series of evaluations are planned. These involve asking individuals, staff, and stakeholders about their experiences which will allow us to understand what is going well and identify next steps. We will be commencing work to evaluate CDP to ADP journey from Nov 2023 onwards.

Independent advocacy, support and guidance

The Social Security (Scotland) Act 2018 places a legal requirement on Scottish Ministers to ensure that independent advocacy services are available to anyone who identifies as disabled and requires support to claim Scottish social security entitlements.

The Social Security Independent Advocacy Service launched in January 2022 and is delivered by VoiceAbility^[238]. The service supports disabled people to access and apply for Social Security Scotland assistance, and builds on our human rights based approach, increasing accessibility and supporting people to be more involved in the processes and decisions which affect them.

It is a free service and is available to anyone who self-identifies as a disabled person who requires support. It is available throughout the whole process for seeking support; from the point of application through to any request for redetermination and appeals.

A referral pathway has been established between Social Security Scotland and VoiceAbility, allowing for direct referrals into the advocacy service.

Promoting benefit take-up and user research

Ensuring that people access all of the social security benefits they are entitled to is a fundamental priority for the Scottish Government. The 2018 Act establishes a legal duty on the Scottish Ministers to promote benefit take-up. As part of our duties under the 2018 Act we must periodically publish a Benefit Take-up Strategy. The latest Benefit Up-Take Strategy^[239] was published in 2021 and sets out the principles which shape our approaches to promoting benefit take-up across the suite of devolved payments.

Part of our work to promote benefit take-up includes tackling stigmatising narratives and challenging negative perceptions around benefit receipt. Through user research, we look to better understand how to address stigma and ensure that Scotland's social security system is designed with input from the people who will use it.

Co-design with people with lived experience

We have put clients' needs at the heart of the design and improvement of all our social security systems and services. This user-centred approach has been central to the design and delivery of social security from the very outset, and now continues with Social Security Scotland using a range of clients' feedback on their experiences to continuously improve the service.

Despite this, we are aware that there are groups of people with lived experience that are less likely to be represented on these panels, and who face substantial barriers in accessing social security support. As such, we established the "Seldom heard Voices" research programme^[240] to address this gap. In line with commitments set out in the Benefit Take-Up Strategy, we will continue to explore opportunities to work with these groups, ensuring that valuable, bespoke methods are considered to support seldom-heard communities to access their entitlements.

Inclusive communication

The 2018 Act included a specific duty on the Scottish Ministers, and therefore Social Security Scotland, regarding inclusive communications. Section 4 of the 2018 Act states that the Scottish Ministers must have regard to the importance of communicating in an inclusive way as part of their duty to keep under consideration what steps they could take to ensure that individuals receive the support they are entitled to through the Scottish social security system.

The 2018 Act explains that 'communicating in an inclusive way' means communicating in a way that ensures individuals who have difficulty communicating (in relation to speech, language or otherwise) can receive information and express themselves in ways that best meet each individual's needs.

Social Security Scotland, in its Corporate Plan^[241], sets out that the organisation is committed to inclusive communication and want to make it as easy as possible for people to access the support they are entitled to. Social Security Scotland will aim to communicate with people in the ways they prefer, and staff will be trained to help them do this.

To assist with this, and to inform service design, extensive research with users was undertaken.^[242] However, in recognising that further improvements should be made^[243] an Inclusive Communication Action Plan 2022-25 was prepared and is being progressed to increase accessibility and participation.

Reserved benefits – ESA and Universal Credit

The Department for Work and Pensions published Transforming support: the health and disability White Paper alongside the Spring Budget on 15 March 2023^[244]. This included an aim to make "the [benefit] claim journey more of a two-way conversation", communicate decisions in a simple and compassionate way and get more decisions right first time.

The white paper outlined plans to abolish the Work Capability Assessment. This assessment helps determine whether someone is entitled to extra amounts in Universal Credit and ESA, as well as any work-related requirements people must meet as a condition of their entitlement.

What can the LDAN Bill do?

The previous paragraphs discuss that some of the issues that the LEAP wished to be explored or changed are not within the power of the Scottish Government or the Scottish Parliament to change. Some of the issues that LEAP wished to be explored or changed are already being actioned through the new Social Security system for Scotland.

We could, however, explore the following in relation to the LDAN Bill, to bring more focus and understanding to the needs of people with learning disabilities and neurodivergent people:

Proposal 1 National and Local Strategies

National and local strategies are discussed in the overarching themes section of this consultation. We could consider requiring Social Security Scotland to report on, and evaluate, how its inclusive communication strategies have taken into consideration the needs of people with learning disabilities and neurodivergent people.

Proposal 2: Mandatory training for social security staff

Proposals are set out in the overarching themes section for mandatory training for health and social care staff and we invite views on whether there are other public sector areas this should extend to.

With regard to Social Security Scotland, we are aware that there is likely to be a significant proportion of people with learning disabilities and neurodivergent people who are eligible for social security, given the employment rates. We could therefore explore whether there is a need for training on learning disabilities and neurodivergence to be a statutory requirement for some Social Security Scotland staff.

Proposal 3: Data collection

We have set out broad proposals on data in the overarching themes section. To better understand neurodivergent and learning disabilities groups and their needs, including how many people are accessing social security benefits, current data reporting could be disaggregated further. For example, current data reporting on ADP in Scotland has a category for "autism and other developmental disorders"^[245] but does not report on learning disabilities, ADHD, FASD or other conditions separately.