Written evidence from the National Autistic Society (DEG0060)
Summary
The Government’s commitment to halving the disability employment gap by the end of this Parliament is incredibly welcome. However, the Government does not collect data on the numbers of people on the spectrum who are in work.
National Autistic Society (NAS) surveys indicate that only 15% of autistic adults are in full time paid work[1] (we are currently undertaking research to update this figure, so it should be used with a small bit of caution), suggesting that the autism ‘employment gap’ is even larger than the disability employment gap. We believe that concerted action will be needed from Government, employers, the voluntary sector and others to address this challenge.
Last year we surveyed our members to inform our future campaigning priorities, and employment was identified as a top 5 issue for autistic adults and their parents/carers. Autistic people want to work and many can, with the right help and importantly in the right job, flourish.
Making sure they get the help they need and find suitable jobs is therefore not only the right thing to do on an individual basis. Autistic people also represent a huge pool of untapped talent that could help our economy grow stronger. Recently published research estimated that 42% of the £29 billion cost associated with autistic adults in the UK is from lost employment[2].
We are concerned that some of the proposed measures from the Government to close the disability employment gap will not meet the needs of autistic people. In particular:
The Government needs to ensure that the new structures allow local commissioning of specialist provision for specific conditions such as autism. It also needs to ensure adequate autism training to all staff involved in employment support services both in Jobcentre Plus and contracted providers. Importantly, the Government needs to make sure that it is measuring job outcomes for specific impairment groups, like autism, so that we can be sure that the reforms are having the desired impact for all groups and not just those who may be easier to help.
We also understand that employment support services and a number of benefits are now devolved to Scotland and that the Scottish Government will implement its own employability programme in 2018.
We believe that both the UK Government and Scottish Government should work together to share knowledge and understanding to ensure that there is a smooth transition towards the Scottish delivery of existing benefits and the creation of new employment support programmes.
Introduction
The National Autistic Society (NAS) is the UK’s leading charity for people affected by autism. We have around 20,000 members and over 100 branches, who are at the heart of what we do. We provide a wide range of advice, information, and specialist services to 100,000 people each year, including in relation to accessing and maintaining employment.
Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. Some specific difficulties can impact on employment. These can include: challenges around verbal and non-verbal communication; coping with change and the need for routine; and understanding other people's behaviour. However, it must be emphasised that autism is a spectrum condition, which means that while all autistic people share certain difficulties, their condition will affect them in individual ways.
Research indicates that:
The NAS’ specialist employment training and consultancy service supports employees and their employers throughout the UK. In 2014-15 the NAS trained over 1,000 people on understanding autistic people in the workplace and supported over 100 different organisations.
As a member of the Disability Charities Consortium (DCC), made up of eight of the largest disability charities in the UK, we support the recommendations outlined in their submission to this inquiry.
1. Steps required to halve the disability employment gap:
As set out in the introduction, the vast majority of autistic people on out of work benefits want to work. However they face barriers to working due to the impact of their condition and the stigma, lack of understanding and discrimination they often face from employers. This means they are not all necessarily ‘work ready’, and may need long term specialist support in order to be supported into work.
Barriers autistic people face include:
Autistic people have told us that mainstream employment support services such as the Work Programme do not feel relevant to them, with a focus on motivation to work and mandatory activity such as applying for a certain number of jobs or attending a certain number of interviews, which does not take into account their specific needs and sets them up for failure. Mandatory activity such as this can cause a great deal of anxiety for autistic people. They may have difficulty reading social cues and knowing when to speak or listen during an interview, and understanding facial expressions that can be impossible to read. Rather than moving them closer to the labour market, this regime can result in benefit sanctions if they are unable to comply with the mandatory activity, and does nothing to help them become more work ready. We believe it should be established in these early stages whether or not claimants have a disability and if they do, that these interviews should only take place with the necessary adjustments. Autistic people should always be able to attend with someone to help them communicate (e.g. a professional advocate, a relative or friend), if they choose.
The Government needs to focus more attention and investment on specialist support for autistic people, as it develops its White Paper on disability employment. It is proposed that the Government replace Work Programme and Work Choice with a new Work and Health programme. However, we have a number of concerns about how this will work for autistic people (see section 3, below). Research into the impact of one specialist autism support scheme showed a 70% success rate.[9] This type of scheme needs to be investigated further and made available to autistic people across the country.
The real terms increase in spending on Access to Work is welcome. However further action is needed to increase awareness of it among employers, and although spending has been increased, the Government must ensure it is adequate and fully resources the Hidden Impairments Specialist Team, created last year. In addition to resourcing the specialist team, funding and structures must allow for referrals to appropriate specialist support providers. Currently, a general support service for mental health and hidden impairment is commissioned from Remploy. Although some referrals are made to other providers, the referral pathway does not adequately signpost people to specialist providers as a matter of course. We believe that a new support service, embedding specialist provision, is required.
Finally, and most importantly, the Government needs to make sure that it is measuring job outcomes for specific conditions, including autism, so that we can be sure that the reforms are having the desired impact for all groups and not just those who may be easier to help. Currently, data for both the Work Programme and the Labour Force Survey is not broken down sufficiently to enable us to understand the employment outcomes and experiences of autistic people.
Interim targets to understand progress made towards halving the disability employment gap would be helpful, but only if there is condition-specific data, to ensure no group is left behind.
2. Support for employers
We believe the Disability Confident campaign has the potential to have a positive impact on the behaviour of employers, but more needs to be done to promote it, and to ensure that commitments by employers lead to more disabled people being employed. The Government should show leadership in improving employer attitudes towards disabled people, building in incentives to the campaign, particularly to small and medium sized employers, and encouraging larger employers to incentivise their own supply chain to also ensure the employment of more disabled people.
Importantly, we also need to understand the impact the campaign has had. We are not aware of any system in place to measure its impact and effectiveness in increasing the numbers of autistic people in employment.
The recent Disability Confident Hidden Impairments Month has been welcome, and we would like to see hidden impairments such as autism to be increasingly covered by the campaign going forward.
In addition, expanding the opportunity provided by Access to Work (making used of additional funds announced in the 2015 Spending Review) by widening its scope to cover routes into work such as apprenticeships, work experience and appropriate volunteering, would be particularly beneficial for autistic people. People on the autism spectrum can struggle with traditional routes to employment such as job interviews. This approach is also advocated by the Disability Charities Consortium (DCC).
The Government should also lead the way as an employer, taking on and supporting disabled people and using its influence as a contractor to require suppliers to do the same.
3. Effective employment support for disabled people:
As previously stated, the NAS is a member of the DCC and we support its calls for improved access to specialist employment support, reduced reliance on mandation, and reformed funding structures. Below, we provide further information from our charity that reinforces the DCC’s recommendations, submitted separately to this inquiry.
We are concerned that the proposed programme is aimed at the long-term unemployed, so autistic people may have to wait two years until they can access the specialist support they need to move into employment. For many autistic people, this will push them further from the workplace, without specialist employment support. Instead, they would have to rely on Jobcentre Plus Work Coaches. Many people we spoke to in our Don’t Write Me Off report[10] told us that they didn’t feel that Jobcentre Plus staff really understood autism. If these staff are not able to effectively communicate with them, autistic people risk not being signposted to the right support, or having their needs missed. All JCP staff should receive adequate autism training as a minimum requirement.
We are also concerned that the £130 million outlined to support the programme represents only a portion of the existing Work Programme and Work Choice budget. It is likely therefore, that the new programme will be targeted only on those nearer the workplace. We have significant concerns that this will leave many autistic people without any support, essentially leaving them ‘parked’ in unemployment, without access to any specialist support. We would want to see eligibility be based on an individual's desire to work, not so-called 'work readiness' measures set by DWP.
Mandation and the threat of benefit sanctions should only be used as a last resort – a recommendation that is also supported by the DCC. As explained above, complying with mandatory activity such as attending interviews at the Job Centre can be particularly difficult for autistic people, who may struggle to communicate face-to-face. The majority of autistic people want to work and will be able to do so with the right support. Engagement on a voluntary basis for work-related activity will be a more effective and positive way to work with autistic people.
As explained above, existing employment support programmes have not met the needs of autistic people. The proposed Work and Health programme contracts should be commissioned at a local level, with disabled people having the choice of commissioning their support from specialist providers, or other providers of effective support. This may include for example, mentors or local job coaches with intelligence of local labour markets. Employment support should also be integrated with health and other local support; autistic people tell us that they need effective support with their mental health needs and managing anxiety before they can be ready for work.
Regarding incentivising providers, funding for any programme aimed at disabled people should be funded primarily via an up-front service fee rather than a payment by results model, in order to attract smaller and more specialist providers. If an element of payment by results is used, consideration should be given to a ‘milestone’ approach, rather than a simple job outcome payment, so that the progress of individuals moving forward in their journey to work is recognised. Any payment linked to job outcome needs to be for sustained employment, not a short-term measure that can lead to a misleading picture of disabled people’s employment experiences.
4. Likely effects of proposed ESA reform:
As members of the Disability Benefits Consortium (DBC), we fundamentally disagree with the Government’s position that the Employment and Support Allowance Work Related Activity (ESA-WRAG) component of £30 disincentivises sick and disabled people from working. Many people on the autism spectrum require long-term, specialist and intensive support in order to work, and cutting the amount benefit paid to those in the ESA-WRAG will do nothing to help them enter employment. Conversely, we believe the evidence shows that a benefit cut will move people on the autism even further from the workplace, and increase their risk of social isolation.[11]
People on the autism spectrum who rely on benefits and face additional costs are already feeling financial pressure. Abolition of this component will push them further into poverty and potentially into debt. They have told us they would not be able to pay for basic living costs such as food and heating. Many autistic people face challenges with social interaction, and a reduction in payment is likely to leave them even more isolated. People on the autism spectrum are more likely to develop a mental health condition such as anxiety or depression, and this proposal will put them more at risk.
Data from the DBC Benefits Survey on ESA[12] shows that when asked about the impact of the proposal to reduce the ESA-WRAG payment, 48 of 67 people on the autism spectrum who responded said they would struggle to maintain their independence (over 70%), and 42 of 67 people said their health would worsen and they would struggle to pay their bills (over 60%).
It is therefore clear that this component is not disposable income or a disincentive to work. We do not believe there is any evidence that abolition of it will promote any positive behavioural change.
[1] NAS, I Exist, 2008
[2] Ariane V. S. Buescher, MSc; Zuleyha Cidav, PhD; Martin Knapp, PhD; David S. Mandell, ScD, Costs of Autism Spectrum Disorders in the United Kingdom and the United States (2014)
[3] Baird G, et al. (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215.
[4] NAS, I Exist, 2008
[5] Households below average income, DWP. June 2015
[6] AGCAS Disability Task Group What happens next? A report on the first destinations of 2009/2010 disabled graduates. Sheffield: AGCAS, 2010; 2011
[7] NAS, Don’t Write Me Off, 2009
[8] NAS, The way we are: autism in 2012, 2012
[9] Howlin, P., Alcock, J. & Burkin, C (2005) An 8 year follow-up of specialist supported employment services for high-ability adults with autism or Asperger syndrome. Autism 9(5) 533-549
[10] NAS, Don’t Write Me Off, 2009
[11] Lord Low of Dalston CBE, Baroness Meacher and Baroness Grey-Thompson DBE. Halving the gap? A Review into the Government’s proposed reduction to Employment and Support Allowance and its impact on halving the disability employment gap https://disabilitybenefitsconsortium.files.wordpress.com/2015/12/esa-review-december-2015.pdf
[12] https://disabilitybenefitsconsortium.wordpress.com/your-experience-of-claiming-benefits/