Why make benefits feel like a burden?
Considering the effects of the Health and disability benefits white paper on our communities

In February this year we released our “Cost of Living with an IMD” report which captured the insight of people living with 12 respective Inherited Metabolic Disorders and clearly laid out how the current economic climate is disproportionately affecting our communities. As part of this, we asked questions about which benefits respondents claimed and how they found the process, and here’s what we found:

Despite being eligible for benefits, many respondents stated that the process to claim benefits was “lengthy”, “stressful” and “startling”, with one individual stating that they dread receiving their child’s benefits renewal letter because it is very in-depth, some of the questions are a bit strange and you’ve got to base the answers on your ‘worst day’ to be considered.

Considering this, due to the length of these processes, and the high burden on those affected juggling work/caring/living with the condition, 35% of respondents didn’t claim benefits and those that did, didn’t receive their full entitlement.

The Health and Disability White Paper was an opportunity to change this, however, ministers have ignored the evidence, and whilst there are some minor improvements to PIP assessments proposed in the White Paper, and recognition that disabled people face too many assessments at present, there is nothing substantial to address the systematic issues.

Further to this in fact, the White Paper actually proposes measures that may increase the risk to disabled people’s financial security in that the PIP assessment process will now also determine eligibility for financial support if you’re not well enough to work, meaning that 1M are at risk of being unable to claim PIP, leading to a potential reduction of income by £350 per month. This burden is then further worsened in that the new system will delegate the assessments of someone’s ability to work to Jobcentre staff, with claimants potentially not being able to challenge these decisions.

1948 saw the launch of the comprehensive system of social security recommended by the Beveridge report of 1942, however, this system which has already been described as “broken” is at risk of becoming even more difficult to navigate. With consideration to this, we’d like to echo Z2K’s call for the government to rethink this high-risk reform and instead focus on improving the current system in co-production with the disabled community to enable for a fairer, more transparent process that will rebuild trust and build a better system.

Hi, I’m Jonathan and I work as the Policy and Public Affairs Officer for Metabolic Support UK.

My background is in genetics and global health and I’ve also worked for the NHS within a busy biomedical science laboratory for over four years undertaking the analysis of samples to ensure you receive the right treatment and diagnosis.

As a creative and compassionate individual, this really is my dream job so I look forward to working closely with the team and our community to tell the stories of IMDs to the world.