RDB0001

Written evidence submitted by The National Association of Disabled Staff Networks

Our Organisation

The National Association of Disabled Staff Networks (NADSN) is a super-network that serves to connect and represent disabled staff networks. We currently have over 350 members representing over 150 organisations, predominantly in the U.K. The National Association of Disabled Staff Networks welcomes attempts to make health assessments more user-friendly and easier to navigate. As outlined below, we do however, have concerns in relation to the health assessment process and the narratives commonly adopted when discussing and assessing eligibility for disability benefits. Please note that whilst we refer to health assessment throughout our written evidence, this encompasses both initial health assessments and renewal as the renewal process can be as stressful and problematic for claimants as the original application.

The Importance of Disability Benefits

Disabled people are financially disadvantaged through the ‘disability tax’, for example funding assistive devices, the energy required to fuel assistive devices, specialist medical equipment, private healthcare or diagnostic tests, specialist food, over the counter medication, cost of support workers, and a reliance on a smaller range of transport, accommodation etc that make it more difficult for disabled people to access low-cost options. Indeed, many items (such as a car or high specification computer) considered to be ‘luxury’ items in the general population, are essential for disabled people. This financial cost is substantial. Scope data suggests that in 2023, households with at least one disabled adult or child require on average an additional £975 per month (£1,122 if updated to account for inflation during 2022-23) to access the same standard of living as non-disabled households (Scope, 2023).

Further, discrimination that devalues disabled people and their skills contributes to lower levels of employment and employment at lower pay scales for disabled people (DWP, 2023; ONS, 2022; van der Zwan & de Beer, 2021). Disabled people may also use fractional contracts or unpaid leave to overcome the cumulative fatigue associated with disability (Upchurch, 2021). Consequently, disabled people are economically disadvantaged compared to non-disabled people (Kim, Parish, & Sinner, 2019), an inequality that has been exacerbated by the recent pandemic and austerity measures (Emerson et al. 2021; Macdonald & Morgan, 2021). It is, therefore, essential that disabled people are supported to receive appropriate financial benefits. The timely provision of disability benefits is especially important as a delay may contribute to worsening symptoms and deteriorating living standards, both through a lack of access to assistive devices etc and the stress and anxiety associated with the benefit assessment process. (Machin & McCormack, 2021).

Failure to provide benefits to disabled people has clear personal and societal cost. For example, significant support may be provided for disabled students when attending University, but if they do not receive the equivalent support allowing them to stay and thrive in the workplace, their knowledge and skills are lost. This is a clear loss to society and the economy. Illustrating this issue, it has been estimated that a 10% rise in employment rate for disabled adults below pension age would contribute £12 billion to the Exchequer by 2030 (see Scope, 2015). Further, the technologies and infrastructure that support disabled people also support the wellbeing and productivity of those who are not disabled (Shew, 2020).

The Experience of Health Assessment

The Department of Work & Pensions undertakes health assessments to determine eligibility for disability related benefits (e.g., Personal Independence Payments) and state that they intend to make the health assessment process ‘simpler, more user-friendly, easier to navigate and more joined up for claimants’. At present, completion of the PIP application requires substantial time and energy and the nature of the application and assessment process renders Personal Independence Payments inaccessible for many disabled people (Ellis, Douglas, & Clarke, 2015; Pring, 2023). For example, the turnaround time for completion of the form is inadequate. These turnaround times can be especially difficult for claimants in full-time employment, those with conditions that impact on energy levels or cognitive function, and people requiring support with the application form. Further, the time, stress, and anxiety associated with application to the health benefit system extends to those supporting disabled people with the process (Foster & Elntib, 2020). Consequently, disabled people may be deterred from engaging with existing systems (Garthwaite, 2014) and fail to receive the support they require.

It is important to acknowledge that many people find the benefit system and health assessment process dehumanising, traumatising, and stigmatising, resulting in feelings of fear and shame, and negatively impacting on claimants’ physical and mental health (Roberts, et al. 2022; Saffer, Nolte, & Duffy, 2018). Assessment of disability and related capacity can be personally humiliating and practically inadequate, especially when assessors do not understand the complexity of the condition they are assessing. For example, an assessment of a person with a fluctuating health condition (who may have rested and managed their condition to ensure they can attend the appointment) is unlikely to provide an accurate understanding of the overall impact of that condition. The process of health assessment is also inequitable. For example, claimants with a mental health condition were more likely to have their DLA entitlement removed after a Personal Independence Payments eligibility assessment than those with musculoskeletal or neurological conditions (Pybus, et al. 2019). This highlights the need for specialist training amongst assessors to truly understand disability, without bias and judgement. Indeed, a substantial number of Personal Independence Payments decisions are overturned prior to or after appeal (DWP, 2021) at considerable personal and administrative cost, suggesting that the current system is not reliable.

False stereotypes and misrepresentations associated with certain conditions, can lead to support being denied. In particular, there is a perceived hierarchy of disability, with some conditions perceived to be less acceptable, legitimate, or deserving of support than others (Geiger, 2021; Thomas, 2000). Further, some conditions are ‘nonvisible’ or ‘invisible’, fluctuating, poorly understood, or may require several years of investigation for formal diagnosis (Chazal & Aymé, 2021; Pheby, et al. 2020). Consequently, some disabled people are especially vulnerable to disbelief and accusations of exaggerating a disability or malingering (Kattari, Olzman, & Hanna, 2018; Olkin, Hayward, Abbene, & VanHeel, 2019). Such disbelief also occurs when claimants’ present medical evidence.  Health assessment can be especially traumatising for people with these conditions and it is important that assessors are both appropriately trained with regard to health conditions and mindful of prior negative experiences of the healthcare system.

Of particular relevance to our members, there is often an assumption that disabled people cannot be highly educated or in a professional role. Such assumptions are related to the broader stereotypes that disabled people are less competent than their non-disabled peers. As a consequence, assessors may not support applications from those in full-time or professional employment. This practice effectively discriminates against those in professional roles, who are already discriminated against in the workplace at all stages of the recruitment, promotion, and retention journey (Brewer, 2022; Brown & Leigh, 2020). It is essential that assessors understand the complexity of disability. For example, recognising the extent to which people may sacrifice their personal lives to ensure they maintain professional status and productivity.

Framing Discussions on Disability Benefits

Discussions of disability or health related benefits typically focus on total spend and the overall cost to taxpayers rather than the needs of disabled people or the value of such benefits to disabled lives. This narrative contributes to a perception that disability benefits are claimed fraudulently, and that disabled people are ‘shirkers’ or ‘scroungers’ (Briant, Watson, & Philo, 2013; Garthwaite, 2011; McEnhill & Byrne, 2014). Further, such narratives often fail to acknowledge that many disabled people are themselves taxpayers, that such benefits enable many disabled people to participate in the broader workforce, and that benefits are often reinvested in the economy (e.g., disabled people employing others to complete tasks that they cannot complete themselves). Indeed, rather than disabled people being a ‘burden’ on the economy it is our experience (as members NADSN) that disabled people often take on additional work (e.g., leading Equality, Diversity, and Inclusion initiatives) that is not paid or rewarded by their employer. Communication relating to health related benefits should be revised accordingly.

References

Brewer, G. (2022). Disability in Higher Education: Investigating identity, stigma, and disclosure amongst academics. Open University Press.

Briant, E., Watson, N., & Philo, G. (2013). Reporting disability in the age of austerity: The changing face of media representation of disability and disabled people in the United Kingdom and the creation of new ‘folk devils’. Disability & Society, 28(6), 874-889.

Brown, B., & Leigh, J. (2020). Ableism in academia. UCL Press.

Chazal, P. E., & Aymé, S. (2021). An objective approach to identify priority rare diseases for the development of solutions reducing the diagnostic delay based on French data. Frontiers in Pharmacology, 12, 734601.

Department for Work and Pensions. (2021). Personal Independence Payment statistics to April 2021. https://www.gov.uk/government/statistics/personal-independence-payment-statistics-to-april-2021/personal-independence-payment-statistics-to-april-2021

Department for Work and Pensions. (2023). Employment of disabled people 2022. Available at: https://www.gov.uk/government/statistics/the-employment-of- disabled-people-2022/employment-of-disabled-people-2022

Pring, J. (2023). PIP telephone line ‘disaster’, with claimants left waiting more than an hour. Disability News Service. Available at: https://www.disabilitynewsservice.com/pip-telephone-line-disaster-with-claimants-left-waiting-more-than-an-hour/

Ellis, L., Douglas, G., & Clarke, H. (2015). Personal Independence Payment (PIP) and Disability Living Allowance (DLA): Report based upon fourteen case studies of people with sensory impairments engagement in application for PIP. University of Birmingham.

Emerson, E., Stancliffe, R., Hatton, C., Llewellyn, G., King, T., Totsika, V., ... & Kavanagh, A. (2021). The impact of disability on employment and financial security following the outbreak of the 2020 COVID-19 pandemic in the UK. Journal of Public Health, 43(3), 472-478.

Foster, H., & Elntib, S. (2020). Stress and well-being of unpaid carers supporting claimants through disability benefit assessments. Health and Social Care in the Community, 28(5), 1525-1534.

Garthwaite, K. (2011). ‘The language of shirkers and scroungers?’ Talking about illness, disability and coalition welfare reform. Disability & Society, 26(3), 369-372.

Garthwaite, K. (2014). Fear of the brown envelope: Exploring welfare reform with long‐term sickness benefits recipients. Social Policy & Administration, 48(7), 782-798.

Geiger, B. B. (2021). Disabled but not deserving? The perceived deservingness of disability welfare benefit claimants. Journal of European Social Policy, 31(3), 337-351.

Kattari, S. K., Olzman, M., & Hanna, M. D. (2018). “You look fine!” Ableist experiences by people with invisible disabilities. Affilia, 33(4), 477-492.

Kim, E. J., Parish, S. L., & Skinner, T. (2019). The impact of gender and disability on the economic well‐being of disabled women in the United Kingdom: A longitudinal study between 2009 and 2014. Social Policy & Administration, 53(7), 1064-1080.

Macdonald, K., & Morgan, H. M. (2021). The impact of austerity on disabled, elderly and immigrants in the United Kingdom: A literature review. Disability & Society, 36(7), 1125-1147.

Machin, R., & McCormack, F. (2021). The impact of the transition of Personal Independence Payment on claimants with mental health problems. Disability & Society, 1-24.

McEnhill, L., & Byrne, V. (2014). ‘Beat the cheat’: Portrayals of disability benefit claimants in print media. Journal of Poverty and Social Justice, 22(2), 99-110.

Office for National Statistics. (2022). Disability pay gaps in the UK: 2021. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/disabilitypaygapsintheuk/2021#main-points

Olkin, R., Hayward, H. S., Abbene, M. S., & VanHeel, G. (2019). The experiences of microaggressions against women with visible and invisible disabilities. Journal of Social Issues, 75(3), 757-785.

Pheby, D. F., Araja, D., Berkis, U., Brenna, E., Cullinan, J., de Korwin, J. D., ... & Wang-Steverding, X. (2020). A literature review of GP knowledge and understanding of ME/CFS: A report from the socioeconomic working group of the European Network on ME/CFS (EUROMENE). Medicina, 57(1), 7.

Pybus, K., Pickett, K. E., Prady, S. L., Lloyd, C., & Wilkinson, R. (2019). Discrediting experiences: outcomes of eligibility assessments for claimants with psychiatric compared with non-psychiatric conditions transferring to personal independence payments in England. BJPsychOopen, 5(2), e19.

Roberts, H., Stuart, S. R., Allan, S., & Gumley, A. (2022). ‘It’s like the sword of Damocles’: A trauma-informed framework analysis of individuals’ experiences of assessment for the Personal Independence Payment benefit in the UK. Journal of Social Policy, 1-16.

Saffer, J., Nolte, L., & Duffy, S. (2018). Living on a knife edge: The responses of people with physical health conditions to changes in disability benefits. Disability & Society, 33(10), 1555-1578.

Scope (2015). Enabling work: Disabled people, employment and the UK economy. Available at: https://www.base-uk.org/sites/default/files/knowledge/ Enabling%20Work%20-%20a%20Scope%20report/enabling-work-report.pdf

Scope (2023). Disability Price Tag 2023: The extra cost of disability. Available at: https://www.scope.org.uk/campaigns/extra-costs/disability-price-tag-2023/

Shew, A. (2020). Let COVID-19 expand awareness of disability tech. Nature, 581, 9.

Thomas, A. (2000). Stability of Tringo's hierarchy of preference toward disability groups: 30 years later. Psychological Reports, 86(3), 1155-1156.

Upchurch, P. (2021). The experience of academics in STEM subjects. Advance HE’s Disability Colloquium Conference. Available at: https://youtu.be/UnHTb1JxKS8

van der Zwan, R., & de Beer, P. (2021). The disability employment gap in European countries: What is the role of labour market policy? Journal of European Social Policy, 31(4), 473-486.

June 2023