Since the Secretary of State for Work and Pensions Liz Kendall made her statement on Welfare Reform, the disabled community and their representative organisations are trying to fathom what the welfare reform and disability cuts will mean for those who rely on financial assistance from the State (for whatever reason).
It’s all still too vague, and uncertainty is causing immense distress and worry among disabled people and their families.
Where M.E./C.F.S. is concerned, as we wrote in our blog earlier this week –
Message to the Labour Party –
Given the amount of meetings I’ve had with many of your MPs, civil servants, and DWP staff since 2018 I thought you would have understood that [No amount of reasonable adjustments or ‘carrot and stick’ can get us back to work] by now. All you are doing is stigmatising and vilifiying three quarters of our community and causing the deterioration of our mental health. Depending on the cuts you announce later today, you may also cause physical deterioration due to poverty. Poverty that we can do nothing to rectify. I have offered emotional support and practical signposting to too many people living with M.E/C.F.S. and their carers over the past decade to know how devastating some of the rumoured cuts will be.
Stripy Lightbulb CIC is continuing to participate in DWP ‘reform’ consultancy work AND collaborating with many other disability organisations to fight for the rights of disabled people by holding the Government to account and pushing for change. We see both of these aspects of our work as valuable within our role as a Community Interest Company. One that works for the benefit of the M.E./C.F.S. community in the UK and elsewhere.
We have signed the Scope charity’s open letter to the Chancellor (see below) and are participating in our first benefits cuts-specific meeting this afternoon with the Disability Benefits Consortium.
Open Letter
This open letter has now been signed by over 50 disability organisations and the list keeps growing.
Firstly – Scope is there to help
We know media reports and speculation about disability benefit changes are worrying for many disabled people. If you are worried about benefits, Scope is there to help.
Our open letter to the chancellor
Dear Chancellor,
We are writing to you as a collection of charities to urge you to think again about cuts to disability benefits.
Disability benefits such as Personal Independence Payments (PIP) and the Limited Capability for Work Amount, can be a lifeline for disabled households and can enable people who receive PIP to work. Making cuts to disability benefits would have a catastrophic impact on disabled people up and down the country. Scope’s analysis of government figures shows that
without PIP, a further 700,000 more disabled households could be pushed into poverty.
Life costs more for disabled people. Huge numbers already live in poverty as a result of these extra costs. The impact of any cuts to disability benefits would be devastating.
We agree with the Government’s ambition to support more disabled people into work. However, making cuts to disability benefits will not achieve this goal or fix the system. In fact, there is little evidence to suggest cutting benefits increases employment outcomes. We know the benefits system is broken and needs reform. That there are disabled people out of work who want to work given the right support. And for some disabled people work isn’t appropriate. Changes to welfare must start here. Not with cuts.
The Government has an opportunity to work with disabled people and the sector to bring about meaningful change. We want disabled people to be heard and supported by the Government. The needs and voices of the disability community should be at the heart of the Government’s plans. Disabled people should not be an afterthought.
We would urge you to safeguard disability benefits from cuts, we fear the cost of cuts is too great.
Yours Sincerely.
We would urge members of the public to sign Scope’s petition (Signatures are just short of 40,000 right now), we need to demonstrate the depth of feeling about this very important issue.
We agree that the welfare system needs reform but financially harming the most vulnerable in society is not the way to do it.
Yesterday on social media, we asked people living with M.E./C.F.S. and their families/support networks to send us details of their experiences with DWP when applying for PIP or other benefits. We plan to submit a folder of case studies to the DWP so they can start to understand how the assessment process impacts our community. This is another Stripy Lightbulb CIC patient-centred project. We would like to build on the current momentum and so aim to submit the folder within the next month. Hopefully, this will give those on the more severe end of the spectrum a chance to submit their experience to us. Please email your case study/experience to [email protected] (can be anonymised if necessary). Please don’t worry if you don’t know how to write a case study, simply send us your experience and we will change the format. We will need your name (initials if necessary), location (county), age, year of diagnosis, and M.E/C.F.S severity as descriptors).
A few ideas of what you might like to include
What went well during your assessment? How did it make you feel?
What went badly? Why? Impact on symptoms?
Have your past experiences varied? How?
Have you noticed your assessments have improved recently? How?
We are grateful for every experience that is submitted, thank you in advance.
Word count – NO MORE THAN 300 words.
The uncertainty surrounding welfare reform proposals is deeply troubling for the disabled and chronically sick communities, and specifically for us as a social enterprise, for those living with M.E./C.F.S. The distress caused by these potential changes cannot be overstated, as many face not only financial instability but also physical and mental health challenges. The Government must prioritise listening to disabled and chronically sick people and their representatives, ensuring that any reforms are not just about cuts but about providing real support for those who need it most. At Stripy Lightbulb CIC, we remain committed to fighting for the rights of disabled and chronically sick individuals, amplifying their voices, and working collaboratively with other organisations to ensure positive change. As we continue to push for a fairer, more supportive welfare system, we urge everyone to stand with us, sign the petition, submit a case study/experience of DWP, and make their voices heard.
The time to act is now.
