Equality of Access to Services and Employment Neurodiversity

Introduction

This paper is one of a suite of NFCC Equality of Access to Services and Employment documents to support FRS Integrated Risk Management Planning (IRMP). A number of groups have been identified as potentially being at greater risk of fire or are potentially not accessing services such as Safe and Well visits. In the public consultation, we will ask people in our communities to work with us to understand further any issues from their perspectives. We also want to work in partnership to re-design services or access pathways where needed.

There are a number of other separate documents relating to becoming an employer of choice for neurodiverse people. Issues are outlined in this document as a means of underlining the link between more engagement with communities for access to services and how that makes us a more attractive employer and vice versa.

Executive Summary

This guide outlines what neurodiversity is, how you can recognise it, how you deal with it and using KPI’s. It also outlines how to collect data, how you learn from it to develop strategies to improve employability, staff engagement in the workplace in the wider community and working partners

Introduction

As a public service focused on excellent service to our communities, we need to ensure equal access to our services for every person and those in temporary residence or in transit through the county.

We know through our incident data that certain groups are more likely to have a fire, and they include people who are living with dementia, mobility issues, and mental health issues. There are however other groups who aren’t necessarily showing as being at higher risk of a fire or injury, but they may not be accessing our services such as ‘Safe and Well’ visits or engaging with the service because of barriers which may include language, perceived prejudice and other societal factors. Equality access means actively seeking to engage these groups, who may be unaware or choosing not to access services from us and other public sector providers.

  • We need to work to reduce fire and other life risks. Within our equal access approach, we need to consider:
  • How to identify all the communities and customers residing in our area.
  • How to develop and improve the provision of goods, facilities, services, and access to services to all those communities across a range of variables including ethnicity, disability, gender, sexual orientation, religion or belief, age and health inequalities etc.
  • Learn from and enhance good practice identified through equality monitoring.
  • Use the results of equality monitoring to mitigate any adverse impact of our goods, facilities, services, and access to diverse communities.
  • Use equality monitoring to prevent unlawful discrimination.
  • Promote good community relations.
  • Use social marketing to make customers safer through changing unsafe behaviours.
  • How to engage with partners and collaborate on sustainable solutions that make the best use of public funding and resources.

Why now? We are refreshing our commitment to fight discriminatory behaviours and create equality of access as part of our next five-year customer safety strategy. Over and above the data from other sources, we have gained additional insights from people impact assessments and insights from neurodiversity charities and groups. This outlines the case for additional work needed for individuals across the neurodiverse spectrum.

Contextual Background

Historically, many conditions which come under the neurodiversity banner have previously been described as disabilities rather than different thinking styles. This has created a stigmatised view of anyone who thinks or behaves differently. Children in classrooms without a diagnosis used to be considered either slow or disruptive. The social and occupational exclusion for neurodivergent people is clear. Since the introduction of the Disability Discrimination Act 1995, the Equality Act 2010, and the Autism Act 2009 we have seen organisations try to comply with the law for all hidden disabilities or conditions.

Neurodiversity has its origins in the Autistic Rights Movement, which emerged in the 1990s. It is reported that the term ‘neurodiversity’ was coined in 1998 by an Australian sociologist named Judy Singer, and was quickly picked up and expanded as a broader term for the infinite variation of neurocognitive functioning seen in people. The 1990s was also a time when Asperger’s syndrome became better understood and was diagnosed more frequently. People with autistic behaviours, without the associated learning difficulties and with average or higher than average IQs identified differently to their autistic counterparts who struggled with learning and often other disabilities. Neurodiversity covers all specific learning differences (SpLD), many of which co-occur or overlap.

Neurodivergence and intersectionality

A person whose neurocognitive functioning diverges from dominant societal norms in multiple ways, for instance, a person who is autistic, dyslexic, and epileptic can be described as multiply neurodivergent.

Intersectionality is the interconnected nature of social categorizations such as race, class, and sex as they apply to a given individual or group and are regarded as creating overlapping and interdependent systems of discrimination or disadvantage. This can provide an added complication and additional layer to neurodiversity and how one deals with or risk assesses it.

Data

According to a report compiled by Julie Logan, professor of entrepreneurship:

  • Only 16% of people in the UK with autism have a job.
  • Only 1% of corporate managers have dyslexia, compared to a population norm of 10%.
  • 25% of the UK prison population have Attention Deficit Hyperactivity Disorder (ADHD).

Despite reports that 10% of the UK population is neurodivergent, dyslexia is the third most frequent condition reported to ‘Access to Work’, the DWP-funded service supporting the recommendation of reasonable adjustments. The Chartered Institute of Personnel and Development (CIPD) research found that only 1 in 10 organisations say neurodiversity is included in their people management practices. This is also in the context that the number of employees on the spectrum is likely to be far higher than that because many mask their condition, may have no formal diagnosis, or choose not to declare.

It is important to recognise that it is common for neurodivergent conditions to overlap, and many autistic people show indicators of more than one. For example, approximately 1 in 2 people with ADHD have dyslexia, 1 in 2 people with ADHD have dyspraxia and 9 in 10 people with Tourette’s Syndrome have ADHD (information sourced from ADHD aware). It is also common for neurodevelopmental conditions to concur with mental health conditions, e.g. ADHD and Bipolar disorder. They are often misdiagnosed as mental illness due to a lack of awareness and understanding.

In addition to the data from other sources, valuable additional insights have been gained from people’s impact assessments and insights from working with charities and other organisations such as the Business Disability Forum, the National Autistic Society, British Dyslexia Association, Royal Society for the Prevention of Accidents and groups focused on neurodiversity.

This document outlines the case for additional work needed to support individuals who are neurodivergent by understanding that the term encompasses a wide spectrum of people and conditions. The concept of neurodiversity comes from a viewpoint that the brain differences are normal, rather than deficits, and this can help reduce stigma around learning and thinking differences. The key is that we treat people as individuals, despite being under a descriptive broad banner of conditions.

The term neurodiversity applies to the range of differences in individual brain functions and behavioural traits, which are regarded as part of normal variation in the human population. Neurodiversity is most associated with Dyslexia, Developmental Co-ordination Disorder, ADHD and Autism Spectrum Conditions and includes any condition that affects some, but not all, thinking skills.

Why should we be concerned about equal access for those with neurodiversity in FRS?

This is not just an issue to be considered in relation to the services we provide, but also in relation to our own staff and the partners and agencies we work with. In the workplace this is not just about inequality, it is also about nurturing talent and ensuring excellence through people.

In our prevention activity, it is about ensuring we design equal access for people who may not be able to access services such as ‘Safe and Well’ visits. They may have experienced poor responses and understanding in relation to hoarding, and other issues that may emerge during attendance to operational incidents.

The evidence base is broad with significant literature sources and research reports but limited in application to our sector.

Cases associated with inequality in relation to neurodiversity are increasing in relation to employment and access to services, including restricted access to education and health services. We are concerned that in our prevention services and how we provide outstanding operational response, we need to be inclusive of neurodiversity and the resulting differential needs of individuals. For example:

  • Despite equality legislation, evidence suggests people with thinking variations still face discrimination when accessing some public services.
  • Neuronormative assumptions and the experience and fear of discrimination prevent some neurodiverse people from accessing mainstream services.
  • Evidence suggests public services do not routinely monitor neurodiversity within their staff and service users, nor are those with neurodiverse conditions routinely involved in consultative processes. This poses a significant barrier to the engagement in the designing of services for the future.
  • Some limited research suggests that staff and service users are reluctant to declare neurodiversity conditions, which makes the identification and monitoring more challenging. It is important that services make it very clear that they can adapt communication and provision of support if they are made aware of these needs.
  • Many adults and children have never been diagnosed as having a neurodiverse behaviour, may not even be aware of it and how it impacts theirs and others daily lives.
  • Some evidence suggests those with neurodiverse condition may be disproportionately negatively affected by spending cuts on voluntary and community services. Some local networks and support groups are very small with low funding even prior to the current COVID-19 situation. It is important to work in partnership with local authorities to understand if public services supporting those with neurodevelopmental conditions are impacted during budgetary reviews.
  • A key evidence gap is in how to amend service prevention work and information to support those with neurodiverse conditions. The issue of education of young people with neurodiverse conditions is particularly important given that many are in specialist education settings or home educated. The British Dyslexia Association suggests that 80% of children on the spectrum will remain unidentified during their education and are unable to access adapted learning to improve their life chances and safety. The Local Government Association has stated that the demand for Sensory Educational Needs Advisory Services (SEN) has risen faster than funding available and is at ‘tipping point’.
  • Evidence and case studies show that lack of awareness is the key barrier to understanding neurodiversity. Those with neurodiverse conditions often have low esteem as they may have had negative experiences in educational, employment and domestic settings. Organisations can be poor at clear and precise communications, which are very important for neurodivergent individuals. (ACAS research paper: Neurodiversity at work, ref 09/16).
  • Evidence also suggests that those with neurodiverse conditions have an increased risk of injury (self-inflicted or at the hands of an abuser or trusted adult).

Our focus for people with neurodiversity

It is important to understand that there are different perspectives. The concept of the neurodiverse paradigm has been controversial among some autism advocates. Critics state that the concept of a spectrum and broader focus does not adequately reflect the realities and needs of those who have higher support needs. There has been debate about the width of the spectrum, for example, should those with conditions such as cerebral palsy or brain injuries having divergent form of neurology be encompassed? Others argue that this medicalises the notion of neurodiversity.

The neurodiversity movement opposition to ‘curing’ autism has produced misunderstanding, some say that it attributes all challenges to social injustice and rejects interventions to mitigate symptoms. However, this could stem from historic treatments such as shock therapies and extreme medication. Useful support therapies are welcome, including building language skills flexibility and broader educational awareness.

As with the introduction of equality monitoring for other groups, early data outputs should be viewed with caution, since it is likely that the neurodiverse population will be underreported.

Children and young people

Neurodiversity is associated with an increased risk of injury, particularly in younger people

A study conducted by Dr Li Guohua, director of the Centre for Injury Epidemiology and Prevention at Columbia University, researched specifically the link between autism and injury. It concluded that children and young teens are 40 times more likely to die from injury than the general population. With drowning being the most common fatal injury in the US among autistic children. It found that autistic children have later development in relation to understanding dangerous situations, may prefer to be alone, may tend to wander and have ‘hide’ responses to loud noises or fear. The Journal of Safety Research (Bonander, Beckham, Janson and Jernbro July 2016: Sweden) concluded similar findings focused on a study considering ADHD, suggesting a 65% increased risk of injury.

The National Autistic Society has also reported a high incidence of self-injurious behaviour associated with those on the spectrum. Common causes are that individuals don’t feel heard or supported, don’t respond well to criticism or being told off, have suffered bulling or abuse and also a manifestation of frustration in trying to communicate their needs or feelings.

Atypical abilities in social interaction, social communication and social meaning often result in difficulty with understanding what others think, resistance to change and sensory sensitivity. 50% of individuals with autism are non-verbal throughout their lifespan. Another 20% may present as non-verbal when stressed because of a shutdowns or meltdowns, a common autistic response to feeling overwhelmed but widely misunderstood. This is significant when considering access to services.

Many autistic individuals have significant sensory issues and may display unusual responses to cold, heat, or pain, this is related to interception. Sensory sensitivity is one of the fundamental indicators required for an autism diagnosis. In fact, they may fail to acknowledge pain despite significant pathology being present or show an unusual pain response such as laughter. Given autism is not identifiable by appearance, assurance of a greater understanding of associated behaviour is necessary to provide appropriate service provision.

Specific Issues

A high proportion of children on the spectrum will not be identified during their educational years.

Children with SEN statements may be in mainstream schools, but also many are in specialist education or home educated.

Neurodiversity in children has been associated with increased risk of injury in the home.

Suggested Actions

Target social media groups and work with charities to get service offer to this group.

Liaise with local education authority to gain access to SEN settings and those that are home educating.

Ask the NHS if they are willing to share our offer to individuals known to them.

Review of how and when we deliver prevention and safety education programs is key, and liaising with other agencies.

Work with the burns specialists to track if there are more burns/scalds in children who are in the neurodiverse population.

Create a working group with representatives from local charities and organisations who support neurodiverse individuals to discuss strategies.

Those who have had to overcome previous access issues to service and are reluctant or fearful of large organisations

As previously mentioned, many people with neurodiverse conditions may have had previous ‘bad experiences’ and may also be reluctant or not know how to access services.

Specific Issues

Some who have experienced past hostility or difficulty in access to public services will need focused encouragement to receive services; and, to apply to work for us in corporate or operational teams.

Some adults may be undiagnosed entering the workplace as an employee and may not know they are neurodiverse. They might be considered difficult or disruptive or display neurodiverse characteristics without understanding or empathy from managers and co-workers.

Suggested Actions

Working with national charities such as the National Autistic Society or British Dyslexia Association as well as identifying other local support networks and charities will improve access to those on the neurodiverse spectrum. Positive action and campaigns, such as advertising on social media that services are seeking to work with the before named charities, may encourage people to come forward.

Staff members may be experiencing repeated and unidentifiable behaviour issues in the workplace. Managers should be trained to identify this and write a supportive adjustments risk assessment including assistive technology, with a copy kept on HR file, so it can be managed more sympathetically by the incumbent manager and subsequent ones. A handover must be performed upon promotion or manager change, so the person is not left exposed to detrimental welfare related issues as a result.

Our workforce – how do we encourage a diverse workforce and encourage existing staff to declare disabilities/neurodiverse conditions? How do we ensure we provide reasonable adjustment and prevent bullying/ostracising?

Our sector frequently declares the desire to be ‘representative of the communities we serve’ and therefore that should include encouraging a neurodiverse workforce.

It is also well documented that our workforce is reluctant to declare disabilities, some of this may be to do with a dominant culture, fear of stigmatisation, or perception of the reaction of their peers or employers.

Neurodiversity and the law

The Equality Act 2010 (section 6) defines disability as a physical or mental impairment that has a ‘substantial’ and ‘long term’ negative effect on the ability to do normal daily activities. Dyslexia, autism spectrum condition and Asperger’s syndrome may be considered under this definition, but as the conditions does affect people to different degrees, the final test will be if the impact is substantial or long term. Generally, employers do proceed on the basis that employees do have a disability and make reasonable adjustments.

Mental impairments do include some neurodivergent conditions. It is important to note that someone does not have to have a clinical diagnosis to be considered disabled.

Neurodiversity and workplace guidance

Organisations which have deliberate inclusion strategies, including the GCHQ, who targeted dyslexic analysts to ‘think outside the box’ and at Microsoft, which has been seeking autistic coders, do so for the benefits diversity and different thinking styles bring.

Neurodiversity adjustments tend to fall into four main categories: assistive technology, workplace tools, coaching for literacy and coaching for ‘executive functions’ such as concentration and memory and there are many adjustments an organisation can make. Flexibility in the workplace, environment, coaching and feedback/tasking are among some of the most common adjustments.

Bullying campaigns also need to recognise that some neurodiverse behaviours may attract negative behaviour from others and/or lead to isolation as people do not quite know what to do or say.

Specific Issues

Encouraging applications from people with a neurodiverse condition.

Staff may be unaware of their own spectrum condition or be unwilling to declare it. It can be that others detect certain behaviours which are perceived as ‘different’ and that either prevents discussion on how to offer reasonable adjustment or based on evidence across all sectors it can lead to bullying.

Inclusivity and access to reasonable adjustments and facilitating digital solutions.

Anxiety about inconsistency of treatment

Suggested Actions

Make it clear in adverts and on your service website that your organisations support people with different thinking styles. Services should monitor and assess their processes for negative impact on declared disability and assess if their reasonable adjustments are fit for purpose.

It is important that employers understand the extent of those requiring support. Also, as part of our workplace planning, consider what training our people need to both understand neurodiversity and maximising their contributions and potential. Awareness training for all-staff is vital, as is management training to ensure managers do not ignore indicators of neurodiversity and that they combat any issues of bullying.

Access to IT or software such as ‘read and write gold’ or other text help should be available to all staff to reduce barriers.

It can assist if staff with a neurodiverse condition have a documented EqIA or ‘Equalities passport’ which documents what solutions or adjustments will assist them, particularly when accessing training or change of department or line manager.

Older people on the spectrum

If older people are perhaps already vulnerable, having a neurodiverse condition can reduce their social interaction.

Specific Issues

Older people on the spectrum may be reluctant to access home safety or wellbeing visits and may have difficulty with some communication methods or be put off by forms to fill in or long documents or lots of leaflets.

Autism is a relatively ‘new’ condition, the first people formally diagnosed in the 1960s are only just reaching old age now and there are many undiagnosed/misdiagnosed individuals who are very vulnerable due to lifelong social communication difficulties and the lack of support they have received. We do not yet fully know what the main issues affecting older autistic individuals are.

Suggested Actions

Alternative access pathways should be available to booking a home fire safety visit. Ask the NHS if they are willing to share our offer to individuals known to them.

Assess opportunities for Volunteering with FRS.

Collaborate with local charities and organisations supporting these individuals to discuss how to reach out to them.

Hoarding

Hoarding disorder often coexists with other conditions (ADHD is the most common condition diagnosed alongside Autism Spectrum Disorder). There is correlation between ADHD and Attention Deficit Disorder (ADD) as risk factors for hoarding disorder, although it is important to be clear these neurodiverse conditions do not cause hoarding. There are three primary pathways to hoarding:

  1. Inheriting the vulnerability to hoard, either genetically or environmentally. It is estimated that between 50% and 80% of those who hoard have a first-degree family relative who hoards. Genetic similarities have been found in chromosomal markers. (The chromosomes are 4, 5, 17, and Johns Hopkins conducted an Obsessive Compulsive Disorder (OCD) Collaborative Genetics Study identifying chromosome 14 as linked by an autosomal recessive pattern to OCD).
  2. Having a high-risk comorbid factor; this speaks directly to the characteristics and challenges of those living with ADHD/ADD daily.
  3. Being (even mildly) chronically disorganised and then becoming vulnerable. Birchall Consulting conducted a random snapshot of cases over the past 10 years and found that only 2.8% of those who sought help for hoarding had been diagnosed with ADHD or ADD. This is concerning because it could mean there are many more individuals with ADHD/ADD who are hoarding but are not getting help.

It is important to note that even though the optics of a hoarded environment may appear similar, those who hoard are not homogenous. Hoarding is found in all cultures, income, education levels, and for different reasons. Hoarding situations can continue to deteriorate until the health and safety of the individual and community are put at risk. In a situation that meets the standard for hoarding disorder, the only difference between an excessive accumulation of perceived valuable things and non-valuable things is the price tag on the items. The key factor is the excessive accumulation and the failure to resolve that excessive accumulation because of the risk it creates.

Specific issues

Emerging evidence suggests that a high proportion of hoarders are found to be neurodiverse.

Suggested Actions

Removal of hoarded materials will create extreme anxiety in autistic people. They will typically have a rationale for why they hoard, and we need to work with carers and charities/agencies who have specialist skills to try and access and then support people who are hoarding and increasing fire risk.

Recognising the need for support during operational incidents

Specific Issues

Operational response, particularly in situations of heightened emotion, staff may encounter atypical responses from some people with ND conditions.

Suggested Actions

Awareness training of operational staff is vital, as is consideration of mechanisms used to reassure individuals and reduce anxiety.

Key areas of focus to improve sector evaluation and engagement with neurodivergent people

  1. Monitoring equality outcomes for both our staff and service users.
  2. Seeking qualitative evidence to support how we design future services.
  3. Pledging work to seek personal commitment to the safe and well advice.
  4. Seeking representation from the neuro diverse community for consultation on design of services and IRMP.
  5. Asking charities and other public sector providers to help survey for needs and outcome measures.
  6. Have a clear strategy for clear and inclusive communication.
  7. Consider training and awareness for staff to improve their understanding of neuro diversity.
  8. Further research with experts on how we support people with neurodiverse conditions.

Glossary of terms and Definitions

Attention Deficit Hyperactivity Disorder (ADHD)

NHS definition – is a behavioural disorder that includes symptoms such as inattentiveness, hyperactivity, and impulsiveness.

Asperger’s Syndrome

National Autistic Society – the term was derived by an Austrian paediatrician, Hans Asperger. It is considered a form of Autism, and people with the syndrome are of average or above-average intelligence and often do not have the learning disabilities that many autistic people have. They have fewer problems with speech, but may still have difficulties with understanding and processing language

Autism – also Autism Spectrum Disorder (ASD) and Autism Spectrum Condition (ASC)

National Autistic Society – Is a lifelong developmental disability that affects how people communicate and relate to people and the world around them. It is not an illness, but rather a different way of thinking. There are many terms used to describe autism, Opinion varies on the language used, and it may vary according to the symptoms experienced. It is a spectrum disorder, which means that the symptoms can vary significantly for individuals.

Dyspraxia – also known as Developmental Co-ordination Disorder (DCD)

NHS – Is a condition affecting physical co-ordination. It is a brain-based motor disorder and is not related to intelligence, but can affect cognitive skills

Dyscalculia

The Dyslexia Association – Is a condition associated with specific learning difficulties relating to arithmetical skills and numbers

Dyslexia

NHS – Is a common learning difficulty that can cause problems with reading, writing, and spelling.

Interoception

Sometimes referred to as the 8th sense – it describes sensitivity to stimuli originating inside the body. It is the perception of sensations from inside the body and includes the perception of physical sensations related to internal organ function such as heartbeat, respiration, satiety, as well as the autonomic nervous system activity related to emotions.

Neurodiversity

A relatively new term used to describe a range of differences in individual brain function. It is an ‘umbrella’ term and a concept that neurological differences should be recognised and respected like any other human variation.

Neurotypical (NT)

An abbreviation of neurologically typical, widely used in the autistic community to describe people who are not on the autism spectrum or have ‘normal’ brain function.

Tourette’s Syndrome

NHS – is a condition that causes a person to make involuntary sounds and movements, which are commonly called tics.

Intersectionality

Intersectionality is a theoretical framework for understanding how aspects of a person’s social and political identities combines to create unique modes of discrimination and privilege. Intersectionality identifies advantages and disadvantages felt by people due to a combination of factors.

Useful websites, publications, and published research

ACAS research paper: Neurodiversity at work ref 09/16

Supported by the National Institute of Economic and Social Research

All Party Parliamentary Group on Autism

Attention Deficit Disorder Association https://add.org/adhd-and-hoarding-disorder-101/

Business Disability Forum https://businessdisabilityforum.org.uk/about-us/

In addition, several services seek to work with charities or forums that understand the conditions associated with ND and can provide support and guidance. Some, such as BDF (Business Disability Forum) are membership organisations who also provide advice but will screen policies and offer helplines for managers and provide network opportunities.

British Dyslexia Association https://www.bdadyslexia.org.uk/dyslexia/neurodiversity-and-co-occurring-differences/what-is-neurodiversity

CIPD with Uptimize: Neurodiversity at work guide. February 2018 https://www.cipd.co.uk/Images/neurodiversity-at-work_2018_tcm18-37852.pdf

Genius Within: supporting people with neurodiverse conditions to fulfil their potential at work and in their career https://www.geniuswithin.co.uk/

National Autistic Society: https://www.autism.org.uk/

Information from other countries

Fire safety for Children on the Autism Spectrum https://www.autismkey.com/fire-safety-for-children-on-the-autism-spectrum/

Fire evacuation procedures for Children on autism spectrum

Research paper (2017): Characteristics of unintentional drowning deaths in children with autism spectrum disorder

Research paper (BM Journal): Autism spectrum disorder and unintentional fatal drowning of children and adolescents in Australia: an epidemiological analysis https://adc.bmj.com/content/early/2020/03/13/archdischild-2019-318658