As the Health and Care Bill returns to the House of Lords, Penny Pepper dissects why it will hit disabled people the hardest

As the Health and Care Bill goes back to the House of Lords, disabled and social care activists are fighting to make sure that disabled people are not the hardest hit yet again. 

It makes me philosophical and gloomy, bringing to mind a piece I wrote for the Guardian in 2015, unravelling the profound difference it makes when you have appropriate care support – which in my case allows me some equality in all areas of my life including work. 

In June 2015, we lost the independent living fund (ILF), despite challenging its closure all the way up to the High Court. We now live with the carnage of social care broken apart by constant Conservative attacks. Their relentless ideology grinds on, that somehow you can ‘balance the books’ and make a profit from care.

The only people doing this are the owners of private care homes such as Care UK, backed by private equity firm Bridgepoint Capital, as Byline Times has previously investigated.

Most of the care cost arguments centre around taxpayers’ money and who is entitled. One of the most preposterous arguments used in the case to close the ILF was that the recipients were somehow privileged with our ‘high’ packages of care, and that it needed to be shared out equitably.

This highlights the Conservative way of thinking; the tired utilitarian approach in which some of us cannot expect to have our ‘high’ needs met, otherwise others among us won’t have their needs met at all. How very dare we have ‘higher’ needs, demanding that we don’t sleep in shit and have help to eat?

In response to my Guardian article, a person commented that I was not “affordable” and that my needs for an independent life were “unrealistic”. Another went from the absurd to the (perhaps) innocently offensive, suggesting that disabled people should be put into suitable “villages” where we would all get along with others like us. Fed and watered and placed on the toilet – an archaic model that debased disabled people to little more than badly kept zoo animals. And there’s the rub.

This notion also underpins the decision of more than half of councils to cut care services to ‘life and limb’ only at the start of this year, due to growing numbers of social care staff being sick or isolating because of the Omicron variant. The limited help offered now only includes eating, hydration, going to the toilet and changing continence laundry.

The situation has and will continue to deteriorate.

David Cameron’s Government promised transition payments after the closure of the ILF and efforts to expand the concept of person-centred care. These were not only hollow, they expose indifference.

Inevitably, every new social care paradigm is based around cost implications. Disabled activists are also demoralised that their early initiatives around person-centered choice and control have evolved for governments to commandeer language and intention. 

Assessing Care Costs

The current focus of activism around the Health and Social Care Bill includes the #MakeCareFair campaign, highlighting why the Government’s amendments to how care is funded are unjust.

If charging for care is complicated now, it is only going to get worse if the amendments are passed.

As Inclusion London, the capital’s leading disabled people’s organisation highlights, “those hit hardest by the reforms will be disabled and older people with assets of less than £106,000 who will not be protected against catastrophic care costs”.

The concept of ‘caps’ seems to operate an algorithm that only accountants will understand. According to Janette Rutterford, Emeritus Professor of Finance and Financial History at the Open University, “it means that the less well-off… will suffer the most… Hard-working parents who, through no fault of their own, have illnesses that require substantial care will still see their assets dwindle almost to nothing and will be unable to help their children as intended. The cap on social-care costs thus works out, effectively, as an inheritance tax for these families”.

There is also a fact not widely understood regarding care costs assessments. Never mind capital and income, disabled people who are not in work make a heavy contribution to their care – no matter the level of their benefit.

This means that, while there are subtle differences between how authorities assess contributions, most devour money from the Disability Living Allowance (DLA), Personal Independence Payment (PIP) and Attendance Allowance (AA). Not forgetting the juicy Severe Disability Premium some disabled people receive as part of their Employment and Support Allowance (ESA), which is also gobbled by local authorities.  

A close friend of mine, for instance, pays £111 per week out of these benefits towards his social care. This is disgraceful and explains why many disabled people fall into the poverty trap – facing decisions of heating over food, therapy over clothes.

Life-long disabled campaigner Dame Jane Campbell, an independent peer in the House of Lords, summed up the hypocrisy of the Health and Care Bill with perfect clarity in a speech in January. She said: “In the Government’s disability strategy, the Prime Minister says… ‘whoever and wherever you are, the spark of your talent and potential can be connected with the kindling of opportunity’, yet this bill introduces a social care means test which drives disabled people into poverty and places a cap on aspiration.”

Over the years, I’ve heard many dark echoes of ‘you can’t expect everything on a plate. There isn’t a bottomless pit or a magical money tree’.

Perhaps not, but the worst capitalist model cannot work either. Activists argue that social care must operate along the lines of the NHS model.

Social care should not be the poor cousin of a welfare state, it should be part of its shining glory. It is normal for all human beings at some point to need social care – and that care should be free. 


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