The inescapable logic of austerity is looking likely, once again, to reduce people with disabilities to objects – and in doing so to reduce their independence, options and enjoyment of life. According to the Health Service Journal, Freedom of Information (FOI) requests from campaign group Disability United found that 37 NHS clinical commissioning groups (CCGs) in England were introducing rules about ongoing care that could force up to 13,000 people with health conditions into care homes. The CCGs will essentially begin saying to people with disabilities and long-term health needs: if you haven’t got the cash for homecare, then it’s off to a care home for you.
As a country we have been brutalised into accepting that each year the porridge pot gets smaller and our belts tighter
Imagine you have been living in your home for years. It might be where your kids were born. Being at home, having your stuff around you, having the greatest possible measure of independence, obviously means a lot to everyone, whether you’re well, ill or disabled. Then one day someone comes and tells you, “Nope, you’re too expensive here. We’re moving you to a care home unless you cough up the money to pay for what you need.”
This sounds innocuous to many people. Disabled people and care homes go together in the public mind as easily as “peak-time train service” and “cancellation”. The FOI requests found CCGs were setting limits on how much they were prepared to pay for supporting people in their homes compared to an “alternative option”, which is usually a care home. They were willing to pay between 10% and 40% above the care home option, which will often not be enough to keep someone in their own home.
Anita Bellows, a member of campaigning group Disabled People Against the Cuts is emphatic about what this means: “Institutionalisation is the logical conclusion of cutting the funds for maintaining people at home.”
As Fleur Perry of Disability United says: “Somebody who has never met the person in question can sign a bit of paper and change everything about a person’s way of life.”
One person told me that when discharged from hospital recently, they narrowly avoided being moved to a care home only because their sibling stepped in to organise an appropriate care package.
Disabled people have long fought against the phenomenon of “warehousing” – storing people with care needs under one roof as a way to reduce the costs of providing them with the support they require. The word warehousing captures the full horror people feel about being forced into institutional care, losing privacy and autonomy. Historically, out-of-town institutions like deaf and blind schools and mental asylums were huge storage vessels for disabled people who needed help and care. This segregation continued into the 1970s and 1980s in the UK, when the battle for independent living was finally won and disabled people gained rights to all of the things non-disabled people take for granted; essentially the right to live their lives however they see fit.
Disability campaigner and retired consultant and trainer in disability and abuse Merry Cross tells me this oncoming change is a recipe for abuse. She remembers hearing about incidents in care homes in the late 1970s and early 1980s of sexual, physical and emotional abuse, theft of money and belongings and staff deciding what clothes people would wear. Abuse is not only historic. It was only in 2011 that the treatment of disabled people at Winterbourne View care home shocked the country.
The tendency to see disabled people as objects rather than complete people leads to the view that they are less than human. That obviously affects the way disabled people are spoken about – the “stick ’em in a home” attitude – and treated. This is why disabled people have benefited greatly from the legal protections provided by legislation such as the Equality Act and the Human Rights Act 1998, which incorporates the European Convention on Human Rights (ECHR).
But saving money apparently trumps all. The CCGs know they are considering something that is at the very least highly contentious. Two CCGs acknowledged in their documents that their policy might contravene an individual’s right to respect for his or her private and family life under the Human Rights Act but felt they could justify it on grounds of cost. One had its policy checked by lawyers to ensure it would not be subject to legal challenge. Our current prime minister would like to pull out of the ECHR and scrap the Human Rights Act.
The government’s never-ending and ideological quest for savings has given NHS CCGs an almost impossible task: to make efficiency savings at a time of increasing demand. It feels like we’ve been talking about “the cuts” forever. As a country we have been brutalised and traumatised into accepting that the only reality is one where each year the porridge pot gets smaller and our belts tighter. It seems that 2017 is the year when the spoon starts to scrape the bottom.
Warehousing returns whenever the idea of reducing the cost of supporting people with disabilities and ongoing health conditions arises. The economic argument for concentrating people into institutions – though of course they wouldn’t be called institutions this time around – is just that it would be cheaper. Nothing more than that. We should all be livid.
Disabled people are to be ‘warehoused’. We should be livid | Mark Brown
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