This is a slightly edited version of notes for a presentation to the ESA roundtable meeting chaired by John McDonnell MP on 29th November 2018. The content is based on previous research work with Spartacus Network, independent research into ESA and the WRAG, research on Access to Work, as well as current research with the Chronic Illness Inclusion Project. The current benefits system was identified as the biggest source of social oppression faced by CIIP participants. We recently completed focus group on designing better social security for people with energy-limiting chronic illness.
IntroductionThe first part of this presentation is four main principles for a new assessment framework. A set of tests that any new system must meet if it is to restore the Human Rights of disabled people. The second part covers points for further discussion. Highlighting areas of current debate and disagreement.
Principles 1: Overturn the ideology behind the Hostile Environment, restore dignity and respect.
The Scientific and Conceptual Basis of Incapacity Benefits (Waddell & Aylward 2005) was the blueprint for ESA and the WCA. Attributes all chronic ill health to malingering, deception or lifestyle choice. It was the pseudo-scientific underpinning of neo-liberal attacks on the welfare state; the rationale for the hostile environment for disabled people. This influential tract, and related ones, must now be publicly rejected by Labour, and its implications overturned, including:
⦁ Recognise that fluctuations in disability benefit caseloads reflects changing demographics and changing patterns of work, not increased rates of malingering or fraud.
⦁ Eliminate conditionality and sanctions as a punitive tool for getting disabled ppl into work.
⦁ Remove the adversarial stance running through all DWP’s assessment systems: from WCA to PIP to Access to Work, casting us as guilty until proven innocent.
⦁ Work to bring about culture change within DWP. Address negative attitudes and unconscious bias entrenched in the department.
⦁ Eliminate “compliance interviews”, benefit fraud hotlines and other instruments of intimidation and suspicion. Restore access to justice and proper legal representation in social security disputes.
Principles 2: Reconfigure the relationship between work and health
There is a strong relationship between social inclusion, social participation and health/wellbeing. BUT:
⦁ Paid work is not the only route to social participation, often not the appropriate route for disabled people.
⦁ Work must never be damaging to health and wellbeing.
⦁ Parity of esteem between paid and unpaid work. The work of caring, volunteering, peer support, and the work of self-care is of equal value and must confer equal dignity to paid work. All are valid outcomes of an improved assessment framework and social security system.
⦁ NHS commissioning should never use employment status as indicator of health or recovery
Principles 3: The purpose of any assessment system must be to empower disabled people.
⦁ Stop all outsourcing of assessments for disability benefits to private contractors. Turn this work into a vocation, not a source of shareholder profit.
⦁ Disabled people are the experts in the relationship between their particular health/impairment, socially created barriers, and employabililty. Bring in impairment-specific experts-by-experience to develop criteria for assessments. Must include learning difficulty, neurodiversity, mobility impairment, sensory impairments, energy impairment, Deaf people, mental distress, cognitive impairment.
⦁ The assessment should be a test of labour market disadvantage, not just “fitness to work”, to account for disadvantages created by barriers in the labour market (eg discrimination) as well as health/impairment.
⦁ Integrate Access to Work assessments with work capability assessment. So people know what available support could increase their employment prospects.
⦁ Integrate assessments of care and support needs into the assessment of work capability. (Availability of support with independent living is huge determining factor in work capability)
Principles 4: An adequate and secure standard of living
⦁ “A life, not just a safety net”. Preventing further loss of health and wellbeing means social security income must support human rights to independent living and social participation, as well as food and shelter.
⦁ Give a secure baseline income enabling people to attempt volunteering or low hours/project work, if this is right for them, without risking eligibility, financial penalty, or facing cliff edge. (UC does not, due to in-work conditionality).
⦁ End unnecessary repeat assessments causing financial insecurity and fear for future.
⦁ Any policy developments or trials of Universal Basic Income or any other alternative model of social security must place disabled people at the centre of designing a system that meets these principles.
How to assess work capability: Revised set of descriptors/criteria or a return to medical certification?
Possible new criteria for judging labour market disadvantage as a spectrum
Combining the medical approach to measuring “fitness to work” with the social model approach of structural barriers to work, here is a list of possible factors to take into account in assessing how disadvantaged disabled people are in the labour market.
⦁ Number of hours you can work per week repeatedly and reliably without damaging health (in a job most suited to your skills and experience). CIIP has developed a spectrum of work capability ranging from full time with difficulty to less than 5 hours per week.
⦁ How big is the trade-off from working? Would being in work entail loss of capacity for social, leisure activities, parenting capacity, even health management and self-care. With energy impairment, all are considered forms of activity to be traded off against each other.
⦁ Prognosis: likely to recover/stable/relapsing-remitting/progressive.
⦁ How restricted is the range of jobs you could perform given your impairment, and given your level of education and skills?
⦁ Degree of employer discrimination you face: difficulty obtaining reasonable adjustments needed to work. How to measure this?
⦁ Cost and availability of additional in-work support needed? (Access to Work funds support above reasonable adjustments, eg BSL interpreter.) Would higher support costs of working mean you are judged as further from the labour market?
Other factors to consider for a new assessment system
Improving the assessment of functional capacity
We must do better than the current crude questions about picking up pound coins and lifting empty cardboard boxes.
The World Health Organisation’s International Classification of Functioning, Disability and Health (ICF) could be basis of new functional descriptors. ICF is a genuine attempt to integrate medical and social models of disability and account for the impact of health conditions on activity and participation. HOWEVER, ICF is informed solely by medical expertise, not by disabled people’s lived experience.
ICF must be supplemented by experts-by-experience of impact of different impairments on work capability. Eg. Fatigue and especially cognitive fatigue are biggest restricting factors for a wide range of health conditions to CIIP research, yet not recognised in ICF, because poorly understood by medical science.
A “real-world” test of work capability?
Should we assess functional capacity against the requirements of existing, real-world jobs? eg Netherlands. Measures 28 functional domains against 7K existing job specifications. On-going labour market research needed.
What about the “real world” outside work? Two people with same functional capacity can have very different capacity for work depending on the level of care and support they have in daily life.
A one-off assessment or assessment as a process?
Some countries have a system of on-going assessment in response to the outcomes of employment support. Eg Netherlands. Assessor is a caseworker who acts as an advocate in mobilising additional support and job-broker, working with disabled people with LCW over 1-2 years. Permanent sickness benefit is awarded at the end of this period if job-brokering is unsuccessful. See example of a model of such an assessment process by Stef Benstead.
A spectrum or binary system of labour market disadvantage?
⦁ If non-disabled people are required to look for work as a condition of receiving social security, there must be a single threshold for “work disability” entitling people to unconditional social security
⦁ On the other hand, the purpose of agreeing a spectrum of labour market disadvantage could be
⦁ To identify what solutions could reduce disadvantage.
⦁ Possibly a differential payment system in recognition of greater distance from the labour market
The implications of a Universal Basic Income for disabled people
No more assessments? Some interpretations of UBI would scrap assessments altogether. A guaranteed income whether in work or not. Non means-tested. Eliminate stigma of claiming.
Disabled people welcome some of the freedoms that UBI would bring. HOWEVER, all agree that disabled people need an additional income to achieve an equal quality of life to non-disabled people.
Should this additional element be awarded on the basis of
⦁ Labour market disadvantage – the likelihood of longer periods of unemployment, inability to build savings? (currently ESA Support Group element)
⦁ The extra costs of living with a disability (currently PIP)?
⦁ Personal assistance needed to achieve independent living (currently social care)?
Assessment for each would look different. But brings us back to the necessity of some form of assessment, and the question of how to determine eligibility for disability-based top-ups through a fairer assessment system.
What about other progressive models for social security reform, eg European Minimum Income Group model?
I have posted up these presentation notes to allow the community to respond to the ideas I put forward, and as a possible starting point for any future work by others. I will be very interested to read comments but I may not be able to respond to them all.