Making employment work for energy-limiting conditions

Chronic Illness Inclusion has influenced a report on disability employment by the Work and Pensions Committee

In April this year Catherine Hale gave evidence to a committee of MPs. She spoke about the measures needed to create more job opportunities for people with energy-limiting chronic illness (ELCI).

A graph showing the gap between the number of disabled people in work and those out of work

Source: Disabled people in employment, Briefing Paper 7540, House of Commons Library, May 2021

In July, the Work and Pensions Committee, chaired by the Rt Hon Stephen Timms, published its report into the disability employment gap. The disability employment gap is the difference between the proportion of disabled and non-disabled people in employment. It currently stands at nearly 30 percentage points.

The Committee based its recommendations on evidence from a number of experts and charities. The report includes recommendations on the collection of data about disabled people in work; employment support and Jobcentre Plus; the Access to Work scheme; the impact of Covid-19 on disabled people in work; and the disability benefits system, and more.

The fact that CII was included among the large national charities giving evidence was a big step forward for the chronic illness community. ELCI, or energy impairment, has not previously been considered by politicians or policy makers as a distinct group of disabled people, or ‘impairment group’,  with specific needs.

We have collected excerpts from the report which make reference to ELCI or energy limiting conditions when discussing disability employment:

Collecting data on disabled people in employment

Collecting data may sound dull. But if the government has no idea of the size of the ELCI population; how many of us are in work; or even the fact that we have similar experiences and needs, how can it make better policies and provisions for us? Business Disability Forum also gave evidence to the inquiry. They made reference to “energy limiting conditions such as ME and fibromyalgia” when listing people with complex conditions who face significant barriers to employment. In contrast with other impairment groups, there are currently no useful data on the numbers of people with ELCI in employment. This is due to a discrepancy in the disability categories used across different surveys. The Committee agreed that the current way of classifying disabilities when collecting employment data needs to be updated:

The Office for National Statistics’ Labour Force Survey collects data based on diagnosis or which bodily systems are affected by a particular condition, rather than the symptoms that people experience. Catherine Hale, Founder and Director of the Chronic Illness Inclusion Project, a user-led organisation for people with energy-limiting chronic illness, energy limitation and chronic pain, described this as “an outdated medical model way of looking at disability in groups of disabled people”. She said that, according to data from the Family Resources Survey, one in three disabled people experience “impairment of stamina, breathing or fatigue”, and that these symptoms are shared by people with a range of health conditions, including autoimmune and musculoskeletal conditions, respiratory illness, fibromyalgia and long Covid.

We recommend that DWP should work with the ONS to explore how it can use the LFS to collect employment data about people in groups who are affected by similar symptoms, even if they have different underlying diagnoses. This should include, but not be limited to, people affected by symptoms such energy limitation and stamina impairment, which can span a number of different medical conditions.

Employment support should be impairment specific

The report calls for more Disability Employment Advisors within Jobcentres. It also recommends that the latter receive more training in different types of disability or impairment:

Catherine Hale said that the number of disability employment advisors is still “too small” in proportion to the number of work coaches. She argued that the Department should recruit more DEAs who have impairment-specific knowledge so they can “apply solutions that are not one-size-fits-all but according to people’s support needs”.

Job carving

Job carving is when employers create roles to specifically fit the capabilities and characteristics of certain groups in the jobs market. CII thinks that job carving is an key solution for people with ELCI who can only work very reduced hours and need complete control over their place and pace of work. The Committee agreed:

Catherine Hale .. told us that job carving “works effectively” at supporting people with learning disabilities into work, and that it could also be an effective strategy for supporting people with energy limiting conditions. She said: “In the same way as job carving is a strategy used with learning disabilities, we think it is a really important strategy to use for people with chronic illness. We need to look at the job offers that are available in the labour market and how they can be tailored, adapted and redesigned so they are more suitable for people who can only work reduced hours, who need particularly flexible hours, who need high levels of autonomy in the workplace and who need provision to work from home.”

We welcome the fact that DWP already encourages providers of some of its disability support schemes to adopt job carving as part of their support to participants. The Department, however, should do more to support and encourage employers to adopt job carving practices when recruiting a person with a disability. As part of its National Strategy for Disabled People, DWP should provide detailed guidance to both providers and employers on how they can job carve roles for disabled people.

 Coronavirus – impact of remote working

People with ELCI have been requesting the right to work from home long before the start of Covid-19. Very often this was denied. Suddenly, everyone adopted this measure in response to the lockdowns. The Committee recognised that working from home during the pandemic has been beneficial to many disabled people. The report supports bolstering employees rights to request flexible working from the start of their employment. Currently the law stipulate this right after 26 weeks of working for an employer.

The pandemic has led to a sharp increase in the number of people working remotely. It is clear from the evidence we heard that while remote working has created new access barriers for some disabled people, for many others it has aided their participation in the labour market. The evidence we heard suggests that the majority of disabled people want to continue working remotely after the pandemic. The Government should support their right to do so. The Government should work with employers to ensure that disabled people are supported to work in an environment that suits them best: whether this is from home or at their place of work. To that end, the Government should amend current legislation and give workers the statutory right to request remote or flexible working from of the beginning of their employment.