Independent Review of Adult Disability Payment: final report - summary

Chapter 1: A People’s Service

The client voice

I have heard throughout the review how both the Scottish Government and Social Security Scotland work to ensure people with lived or living experience of Adult Disability Payment are able to shape both policy and operational decisions.

The Scottish Government stood down the former Disability and Carers Benefits Expert Advisory Group (DACBEAG) in 2023, which provided policy advice to Scottish Ministers. However, I understand that Scottish Government policy officials continue to engage directly with stakeholders through the Ill Health and Disability Benefits Stakeholder Reference Group. Social Security Scotland similarly has an Operational Reference Group covering operational issues that integrates membership from the former Inclusive Communications External Stakeholder Reference Group.

I understand that Social Security Scotland set up its Client Panels in recognition of the need for engaging people with lived experience in ongoing development and improvement of Social Security Scotland. It has recruited Client Panel members from current clients. The Client Panels are a form of social research, involving surveys, interviews and focus groups with participants. Research has informed a range of operational decisions, including letters, SMS updates, and updates to the Charter. I also understand that Social Security Scotland draws insights from the Client Survey and complaints.

I asked disabled people and stakeholders about their ability to influence both policy and operational decisions. I heard frequently that people and organisations are growing tired of repeated conversations with little evident change to the system, which damages trust and results in disengagement. I also heard that some seldom-heard groups had a distrust of the State, and I repeatedly had to emphasise the independence of the Review in meetings.

Recommendation 1:

The reinstatement of an “expert by experience” group to guide the next stage of the evolution of Adult Disability Payment following the publication of this report.

Raising awareness of Adult Disability Payment and encouraging applications

I understand that there are challenges with estimating the number of people who are likely to be eligible for Adult Disability Payment, but do not make an application. I acknowledge that it is not currently possible to estimate take-up rates for disability benefits, or for specific client groups. I heard from stakeholders that there may be several reasons why someone who is potentially eligible for Adult Disability Payment does not make an application:

• people have limited awareness of Adult Disability Payment, and people may not know they are potentially eligible
• there is perceived stigma about applying for disability benefits, which can be a particular issue in some minority ethnic communities
• there is also stigma associated with mental health problems that can function as a barrier
• the application process or fear of rejection may deter some people from applying
• people see the process of applying as complex or challenging and this can negatively impact on people’s wellbeing
• some people think Adult Disability Payment is for people with physical health conditions
• people may perceive public resources as scarce and think others are more in need
• a lack of awareness that Adult Disability Payment is not means-tested.

Stakeholders frequently raised the legacy of PIP. Some people describe their experience of engaging with Department for Work and Pensions (DWP) as “traumatic.” I also heard that people were not aware of the differences between Adult Disability Payment and PIP. One stakeholder suggested that Social Security Scotland needs to engage more with disabled people to try and improve the awareness of these differences.

I also heard that people’s mental health can be a significant reason for not making an application:

"It impacts my mental health as it focussed on the things I can no longer do. I had to appeal to get the right level of support for the mobility component. It’s soul destroying having to relive all the trauma that you go through getting a diagnosis of (Multiple Sclerosis).”

- Quoted in MS Society Scotland response to the Independent Review of Adult Disability Payment Call for Evidence

In response to my call for evidence, one organisational respondent noted that there was not enough available evidence or research detailing the experiences of uptake of social security benefits among Black and Minority Ethnic (BME) communities, noting the Scottish Centre for Social Research had highlighted this in recent research commissioned by the Scottish Government.

"Unfortunately, there is a significant lack of information on the experiences of Black minority ethnic (BME) people who are applying for (Adult Disability Payment), as well as on BME people with disabilities in Scotland and their access to benefits.”

- Coalition for Racial Equality, response to the Independent Review of Adult Disability Payment Call for Evidence

The Scottish Government has a Benefit Take-up Strategy to raise awareness of all its benefits and to support access, but this is not currently benefit-specific. However, the Scottish Government’s response to my interim report noted that the findings of the independent review will inform its next Benefit Take-up Strategy. It was positive to hear that further research will be undertaken to undertsand the barriers people from seldom-heard groups may face in accessing social security. It is also positive to see evidence of using the outputs from that research in implementing the Benefit Take-up Strategy to develop approaches to communicate and promote devolved benefits to seldom-heard groups.

Recommendation 2:

To further develop strategies to effectively engage with seldom-heard voices and individuals who may be eligible but do not apply due to stigma. To address the societal and sometimes cultural stigma associated with disability benefits to ensure broader and fairer access.

Recommendation 3:

Social Security Scotland should consider how effective its understanding is of take-up amongst seldom-heard groups and consider ways to maximise its reach.

Trauma-informed approach

For those accessing Adult Disability Payment, the decision-making and consultations can further add to the distress experienced.

A trauma-informed approach to practice aims to minimise the risk of causing trauma and to prevent re-traumatisation. The National Trauma Transformation Programme launched in 2023 includes Government-supported guidelines that reflect the importance of this approach.

However, during the Review, some people described experiences during their Adult Disability Payment journey that did not align with a trauma-informed approach. For example:

"a lack of trauma-informed practice was evident in all aspects of the process, including application, assessment, written and verbal communications.”

- Premenstrual Dysphoric Disorder and the welfare state: Recommendations for reform

When I met with a group of people who describe themselves as living with pandemic-disability (this includes people with Long Covid, people with vaccine injury, many of whom have Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and people at high clinical risk of adverse consequences from re-infection) they stressed how helpful it would be for Social Security Scotland to be aware of the extent of trauma that many of them will have experienced.

Such experiences can have implications for how Social Security Scotland delivers its services and trains case managers and practitioners.

Recommendation 4:

In addition to the pilot underway within Social Security Scotland ensure a trauma-informed approach is embedded in all aspects of its work, by producing a framework where trauma-informed principles are reflected in the practice of Social Security Scotland.

Accessing other relevant services

Beyond the realm of social security, people’s lives are interconnected, and they will often receive services from a range of agencies. It is important that these services are complementary and joined up. Most people I spoke to during the Review felt strongly that social security for disabled people and its budget should remain distinct from other services, whilst ensuring that it sits as part of a wider package of support for disabled people.

In a country the size of Scotland it should be possible for the Scottish Government to use its reach to ensure everyone who makes an application for Adult Disability Payment (whether the application is successful or not) is signposted with their consent to the relevant local statutory or voluntary services that may be able to provide additional advice, support, and signposting.

Recommendation 5:

For Social Security Scotland to strengthen its Local Delivery service partnerships to ensure that appropriate links are made to signpost or refer clients seeking assistance in connection with Adult Disability Payment to local services (with the client’s consent) so they can ensure they get access to the help and support they may need. This should include identifying areas of best practice in partnership working to continue to enhance the service for Adult Disability Payment clients.

Accessing pre-application advice and support

During the Review I heard that many disabled people recognise, and trust established services like Citizens Advice Bureaux (CABx), because people perceive them to be independent. I also noted that disabled people felt they would not have been able to navigate the application process without support from these services.

"When a benefit check with one of our Social Welfare Specialists identifies an individual is eligible to claim (Adult Disability Payment), we have a 100% take up record of them going on to make a claim – with the guidance and support of one of our specialists. After completing and submitting the (Adult Disability Payment) application form, nearly every person has reported they would not have been able to cope with their claim without our expert help and support.”

- Multiple System Atrophy Trust response to the Independent Review of Adult Disability Payment Call for Evidence

Unlike advice services, it is important to recognise that the remit of the Local Delivery service is not to provide advice, but to provide pre-application support.

In my engagements, I heard about:

• low awareness of Social Security Scotland’s Local Delivery service amongst disabled people
• some people who were aware of it and some other stakeholders expressed concerns about a potential conflict of interest in Government-funded or -delivered services supporting disabled people with applications or re-determinations.

I asked about the Local Delivery and Independent Advocacy Services as part of the consultation.

• A few consultation respondents mentioned long wait times and trouble accessing these services as a barrier to take-up.
• Some people expressed frustrations with having to call a single number in the Social Security Scotland contact centre, rather than having a dedicated route to Local Delivery services.
• A few consultation respondents explained that they needed multiple appointments due to the length of the application form.
• Some people felt that staff require improved training particularly to address a lack of awareness of certain conditions and the impacts they have on daily living.

Some people suggested that if they can get good advice, support, and help to fill in the form all in one place why would they use a limited service.

"People do not need an advocate who cannot advise. This needs to be looked at. Funding needs to be diverted to advice services for disabled people. The term advocacy is not being used in the correct way and it [is] not the correct service to access benefits. People need Welfare Rights Advice to access their rights and entitlements.”

- FAIR Ltd, response to the Independent Review of Adult Disability Payment Call for Evidence

I acknowledge, however, that the Scottish Government’s Service Standards for the Independent Advocacy Service require the separate provision of advice and advocacy.

I also heard positive feedback about these pre-application services:

• people reported positive experiences with their Local Delivery Adviser
• there was appreciation for meeting in a preferred location
• Social Security Scotland staff were helpful on the telephone
• some stakeholders expressed favourable views about home visits and interpretation services working well.

I visited a local service that particularly welcomed the support provided by the Independent Advocacy Service, including the translation services and drop-in appointments.

More widely, I heard from many welfare benefits advisers and support workers in the third sector. In most cases, I heard how their workload is increasing, how there was limited or no statutory funding provided to their organisations to deliver services, with most charities reporting that they rely on fundraising.

I understand that the Scottish Government provides funding through a mixture of a debt advice levy and resource funding to support services which help to maximise incomes, reduce debt and tackle poverty. The debt advice levy is restricted for funding debt advice only, with the resource funding focused on income maximisation, benefits advice and debt advice.

Observation 1:

The user experience of Adult Disability Payment is linked directly to the provision of independent advice and support to clients with the application, re-determination and appeals process and is essential to the realisation of the human rights of the client. There are many advice services across Scotland that clients recognise and trust, as they will be familiar with these services. Ensuring that they are appropriately resourced to support disabled people with Adult Disability Payment is essential to the realisation of a client’s human rights. The Scottish Government should consider how it is effectively placed to ensure that these services receive appropriate support in the delivery of vital services.

Recommendation 6:

Social Security Scotland should ensure that it actively promotes and gives due prominence to independent advice services to both potential and current clients, including in materials that clients receive from Social Security Scotland.

Recommendation 7:

Social Security Scotland to increase and improve the promotion of the Local Delivery service and the Independent Advocacy Service.

Recommendation 8:

Introduce a dedicated route to speak to Social Security Scotland about Local Delivery and to book appointments.

Recommendation 9:

Improve Local Delivery staff training to address a lack of awareness of certain conditions and the impacts they have on daily living.