Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Section 9: Social Security

Introduction

The consultation set out three proposals (linked to other key sections of the document) designed to bring more focus and understanding to the needs of people with learning disabilities and neurodivergent people specifically with regards to social security. These proposals were:

• Proposal 1: National and Local Strategies - to 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 - to 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 - to disaggregate data reporting from Social Security Scotland to better understand neurodivergent and learning disabilities groups and their needs, including how many people are accessing social security benefits.

Main Findings

Overall, 365 respondents provided feedback at this section. Among those who responded, most expressed support for one or more of the proposals (and many supported a combination of all three). The main reasons given were similar to those given in response to the overarching sections on national and local strategies, mandatory training and data collection, which appeared elsewhere in the consultation document.

Proposal 1: National and Local Communication Strategies

There was consensus that much needed to change with existing processes for Social Security claimants to make the system easier to navigate and this proposal was welcomed as a means of helping to improve the service user experience. Despite recent changes, many perceived that the current system remained complex to navigate and, therefore, welcomed any moves to make information and processes more accessible (discussed more below):

“Currently application forms and assessments do not meet the needs of autistic and other ND [neurodivergent] people, as well as people with a learning disability. The questions do not take into account the lack of relevance to autistic (other ND) experience. The process does not accept that many will not be in contact with services that would allow them to provide evidence as autism and other ND is not treatable...” (LDAN Support/Representative Organisation - Autism)

Any action taken to improve communications was welcomed, and many respondents reiterated their earlier support for a wide range of accessible communications to be made available routinely. Similarly, Social Security Scotland was urged to ensure that inclusive communication strategies encompassed a broad spectrum of communication needs, ensuring that all individuals, regardless of their neurodivergence or learning disability status, could access information and services effectively.

The main perceived benefits of this proposal were an increase in accessibility, equality and accountability:

“A national requirement to report on and evaluate inclusive communication strategies would provide the data needed to ensure that individuals, regardless of their location, are treated with parity and equity, receiving information in a way that is fully accessible.” (Advocacy Service)

It was also felt that improved communications would have an impact on reducing such things as missed appointments, inappropriate and inaccurate claims and payments, the need for/use of sanctions, etc. which currently occurred due to communication barriers.

It was felt that any obligation on DWP and Social Security Scotland to ensure that their communication strategies have considered the needs of people with learning disabilities and neurodivergent people should be accompanied by requirements to highlight where needs are not being met, and to act upon any gaps/deficiencies. In addition, it was considered important to include a requirement to ensure that people’s needs are being met within reasonable timeframes.

Respondents who supported this proposal again argued that strategies must be inclusive of all disabilities with an understanding of intersectionality. Respondents also again stressed that strategies must allow for a wide range of communication preferences to be met, including, for example, choice of face-to-face, in person or remote (online or telephone) assessments for Social Security benefits. The need for timely communications was stressed.

Independent Advocacy

Several respondents commented that specific provisions for advocacy in the context of social security communications would be welcomed i.e. someone to advocate for the resources that individuals are entitled to. The provision of advocates to help people navigate what were perceived as often complex processes and systems was seen as potentially empowering people with learning disabilities and neurodivergent people to voice their needs and concerns to ensure they are heard (i.e. supported decision-making).

Access to independent advocacy was seen as especially important for individuals when dealing with benefits provision or complaints. Advocates were also considered to be well-placed to identify systemic gaps or failures in the delivery of Social Security Scotland’s minimum core obligations (such as inclusive communication).

In relation to the new universal provision set out under the Social Security (Scotland) Act 2018, there was a specific call for data in relation to the take-up of independent advocacy within the social security system in Scotland to be publicly reported through the new accountability mechanism proposed elsewhere in the Bill.

Proposal 2: Mandatory Training

Echoing earlier findings in the consultation, there was strong support for all public service staff, including Social Security staff, to receive mandatory training.

Support was again underpinned by views that the scope and reach of training should be as broad as possible to benefit the wide range of individuals covered by the LDAN Bill. Views were expressed that training must cover a wide range of specific conditions due to the lack of understanding and stigma that currently exists for some. There was a specific emphasis in this section on training for Social Security staff to include a focus on autism (as a hidden disability) and not to focus on neurodivergence more generally, as well as to cover training in relation to multiple, complex and fluctuating needs and the impact of co-morbidities.

Reflecting views on mandatory training more generally, there were again strong calls for lived experience input into the development and delivery of training for Social Security staff, as well as potentially input from the third sector:

“…training initiatives must be driven by lived experience and co-produced in collaboration with individuals from these communities. Training programmes should not only be led by individuals with lived experience but also provide opportunities for paid involvement, recognising the value of their expertise and contributions.” (LDAN Support/Representative Organisation - Neurodivergent Focus)

Respondents also encouraged training for all staff who may interact with communities of interest (rather than being restricted to just ‘some’). There were also calls for Social Security Scotland to employ more people with learning disabilities and neurodivergent people /have a more diverse workforce who better understood the needs of applicants/claimants.

There was less evidence in responses around the need for training to be a statutory (rather than voluntary) requirement, although a small number did emphasise that this would be necessary to achieve the greatest impact.

Several respondents cited experiences of negative interactions with Social Security Scotland staff, especially for those with hidden disabilities or undiagnosed conditions, and felt that better training of staff would help to ensure that all people were treated with dignity and respect in the future. Current misunderstanding and stigma were prevalent, it was felt, for many minority and undiagnosed conditions.

Proposal 3: Data Collection

Further detail/disaggregation of data reporting was welcomed primarily on the basis that it would help to facilitate service delivery improvements, workforce planning and financial planning:

“Data on extent/type/variations of neurodivergent conditions would be especially helpful to provide a continuous learning loop so that services provided exactly match demand.” (Neurodivergent Individual)

It was also felt that data would be helpful in highlighting the numbers of individuals who currently claim for support among those who are eligible (and the number who do not). This would help to monitor and address any awareness issues.

The proposals to disaggregate data would also help in making some minority groups more visible in the statistics, it was felt, which would help with societal awareness more generally. Similarly, a minority of respondents noted that there was a need to further disaggregate the data to provide insights into such things as the gendered experience of the Social Security system and unique issues faced by those living with other protected characteristics.

The main caveats to support were that this proposal, if taken forward, must be done in a way that maximises privacy, choice and anonymity for claimants.

Disagreement with the Proposals

Very few people said that they disagreed with any of the proposals linked to social security and most simply offered caveats to support or raised what they believed to be weaknesses with the proposals.

Some felt that the proposals, as currently worded, could be strengthened. For example, rather that exploring or considering the ideas set out (as was the current wording in the consultation document), the LDAN Bill should legislatively prescribe or make it a duty for Social Security Scotland to deliver on these plans, i.e. they should be made to report on, and evaluate, such things as its inclusive communication strategies, and for there to be a requirement for mandatory training.

The main negative or critical feedback in relation to Social Security Scotland reporting on and evaluating its inclusive communication strategies were that:

• The proposals would only be meaningful if accompanied by a clear plan for enforcement/monitoring;
• That any changes in monitoring/reporting requirements should avoid increasing administration burdens for Social Security Scotland (which may in turn have adverse impacts on such things as claims processing times, etc); and
• Lack of clarity (or consensus) around the need for this to be included as a legislative requirement.

The main concerns in relation to mandatory training were:

• That the proposals could be specific about who would be trained (with a wide audience being preferred);
• That there must be clarity around which roles training would apply to and what degree of training was required (with a proportionate requirement for training linked to job roles); and
• That time and money invested in training might be better spent on such things as improving access to diagnosis.

The main concerns in relation to data collection were:

• Lack of clarity over how data could be used and stored;
• Issues linked to permissions to hold and share data;
• That this would be time and resource intensive (and money may be better spent on other things);
• Uncertainty about how disaggregation would be achieved, for example, for individuals with co-morbidities and dual diagnoses;
• Doubts regarding the accuracy of any disaggregation given the lack of clarity or definition around neurodivergence; and
• Perceptions that individual groups may be conflated, and that the disaggregation would not be sufficiently sophisticated to identify and understand individual (especially minority) populations.

More general comments included that these proposals, singly or combined, would be expensive to implement and may have no material positive impact on individuals’ day-to-day lives.

Other Comments and Considerations

There were a number of ‘other’ comments made in relation to social security. Most of these related to perceptions that the current system was not user friendly for either people with learning disabilities and neurodivergent people (the focus instead being on physical disabilities). More was also needed to support those without official diagnoses, it was felt.

Many commented that the current system (including claiming, adjusting or making appeals in relation to benefits) was too stressful for individuals and their families and was fraught with barriers, mainly linked to inaccessibility of communications (including face to face, online, written and telephone communication). Comments were made that the system was not “compassionate” and that staff at Social Security Scotland sometimes lacked empathy^[4].

Other specific proposals (mentioned by just one or two respondents each), which may be welcomed in the social security sector included:

• Introduction of the Minimum Income Guarantee for disabled people (as currently being explored by Social Security Scotland);
• Reviewing the eligibility criteria for Adult Disability Payment (ADP) to take greater account of neurodivergent conditions and the barriers people with learning disabilities and neurodivergent people face in their daily lives. Linked to this, there needed to be less emphasis on the need for medical evidence, such as diagnoses and medical treatment, and more recognition of informal social support;
• That Social Security Scotland could adopt more inclusive, person centred and flexible responses to service users; and
• That eligibility criteria for certain benefits should be made less “strict”.

Several also commented on perceived problems linked to the process of applications/eligibility criteria for various benefits, the main comments focussing on:

• The complex/onerous application process;
• Assessments being stressful and often inappropriate for people with learning disabilities and for some neurodivergent people. The annual review of lifelong conditions was also seen as outdated, unnecessary and unhelpful;
• Assessment waiting times being too long (which may be compounded for people without formal diagnoses);
• Poor communication including a reliance on digital/telephone communication and over-use of abbreviations and acronyms;
• More sensitivity and flexibility being needed in the system to accommodate fluctuating levels of need over time (especially for children and young people); and
• That the process of transferring benefits from the DWP to Social Security Scotland felt ponderous and slow with many saying that it continues to feel complex and onerous.

There was also a call for the Scottish Government to go beyond the planned independent review of Adult Disability Payments and undertake an independent review of disability and carer payments more widely.

Both here and elsewhere in the consultation, a small number of respondents also called for better systems to be in place to help support people with a learning disability into the workplace.

A number of respondents focused specifically on the challenges faced by family and carers who often apply for assistance on behalf of their loved ones and felt that additional strategies and support should be in place for them. This included the suggestion of Digital Passports being used as a tool to help carers applying for Adult or Child Disability Payment.

A small number of respondents also commented on wider social and systemic issues linked to being in receipt of social security, the emphasis being that while access to social security is a human right, ‘being on benefits’ exposed some recipients to feelings of stigma and discrimination. Raising awareness of entitlements to benefits and reducing stigma were seen as wider public education task to be pursued.

Other comments from a small minority hinted that the LDAN Bill's true potential would be limited without full devolution of social security powers to Scotland.