With Northamptonshire County Council’s finances in turmoil and an apparently never ending need for budget cuts Steve Scoles spoke to wheelchair user John Smith about living a decent life in a time of austerity…
We, the able-bodied, who have cheered on paralympians and done fun runs for charity, think we get it.
We know that public spaces should have wheelchair access (but sometimes don’t), we know that there should be hearing loops and braille instructions (but sometimes aren’t), we know that there should be disabled loos (but sometimes we nip in there if we are really desperate).
Basically we know that things should be equal because that’s the modern way and all that insulting playground name-calling and lack of understanding belongs in the days of black and white telly. Battle won isn’t it? Equality box ticked…
Five minutes in the company of John Smith, former youth worker, former disability rights worker and current member of Northamptonshire Disabled People Against the Cuts (DPAC) soon made me realise that I wasn’t so much wrong about the world as I was wrong about me. I thought I knew what this was all about but…
Now I have introduced you to John as a disabled person whom we are about to hear from, what is the first thing you are wondering about him? If you are like me it will be something like: what’s his disability?
Right there in that first thought, full of good intentions and wanting to engage with ‘the problem’, I reduced John in my head to a disability label. All 52 years of his life in Daventry, his various jobs, his setbacks and his victories were going to be popped in the mental drawer marked spina bifida and a crucial battle would have been lost – the one where John the person takes centre-stage over his disability.
And in many ways the struggle to maintain human dignity is right at the heart of what the impact of austerity and the extended culture of cuts to budgets really means.
John, who uses many hospitals in the region, made a telling observation about how he gets himself ready for a stay on a ward.
“I have to mentally prepare myself for it. I have to forget that I have rights, dignity and control, to survive in hospital. I have to mentally prepare myself for it. Sometimes it is better and I get spoken to and treated like a person but if that doesn’t happen at least I have prepared myself for it,” he said with more of a tone of cold anger than sarcasm.
He is supported by four carers who visit daily and is also getting visits from a district nurse connected to a recent hospital stay. John effectively manages his own healthcare package.
“I rely on county council, social care support, plus continuing healthcare support and I also have a direct payment so I employ my own person who does stuff as well. I have a personal health budget which helps me with my health, assists me to lose weight and keep my healthy lifestyle type thing. All of those have been impacted by the level of cuts that have been going on for the last nine years,” he explained.
“We thought there would be more control but in actual fact there isn’t. If the budget is changed and they don’t give you enough money you have to cut your own support. At the moment there is an issue about employing people. They have a set rate which is very close to the minimum age. Northamptonshire is a very rural area so attracting suitable carers to employ is very difficult. You haven’t got the flexibility to offer higher wages because the county council only gives you a certain amount and that hasn’t gone up for years. With the madness that is happening in the county council it is not going to be going up for a while.”
Handing over control of the care package is an example of that pat-ourselves-on-the-back progressive thinking that seems like a no-brainer but offers convenient benefits to the care providing authorities.
For instance it is difficult to quantify how much disabled people as a group have suffered from the cuts because they have suffered in different ways.
Not only have some of the tough decisions been devolved down to the service user but perhaps more importantly, the overall objective of the support lies with the person organising the care package too.
It leads to a situation where disabled people are constantly having to pitch for and justify the support they are asking for.
“The old assessments used to be about how can you feel safe, how can you be more included, how can you have more choice and control, and how can you be more independent. I would say I feel less safe, I feel less included, I have less choice, less control and less included in the community since then. That was what support was supposed to be about but it has changed and changed. I would say all of the members of Northants DPAC feel the same. For me the whole system isn’t working if everyone feels that.
“My needs have got worse, my needs have increased but in terms of eligibility criteria the county council only fund what they perceive as critical needs. The national government has moderate, substantial and critical categories of need. Northants County Council in their wisdom decided they are not going to do those. They split substantial into greater substantial and lesser substantial and decided they would only support greater substantial and critical.
“You have the madness of things like having a wash might be considered greater substantial or critical but getting dressed isn’t. They wouldn’t get support to get dressed but they would be able to have a wash. People’s needs are needs, it doesn’t matter whether the council decides if it’s critical or not.”
When John’s care package started in 2001 he qualified for 28 hours of support. Despite the notion of austerity being relatively recent John has known nothing but cuts and reductions and now only receives 11 hours of support.
Work capability assessments radicalised many disabled people because of the adversarial nature of the testing and caused a multitude of DPAC groups to spring up across the country.
John said: “DPAC came out of the ATOS and the work capability assessments and the anger people felt about how useless those assessments were and how degrading and target driven they were. They weren’t about the individual people and the support people got. We have got quite a lot of members that went through that system and are still angry about that experience.
“The language that they used was about spending less money. It was a different attitude. They talk about employment saves money and all that but they cut the Access to Work budget which is a scheme which enables disabled people to stay in work. Obviously there are barriers when you go into a job, you might need signing, you might need wheelchair access and Access to Work provided funding for that. The employer did get that funding so it was an incentive to employ me.
“But at the same time as saying they want you to work they take away the support that enables you to work. We want people to work if they are able to but we don’t want them to work if they are not able to. We don’t want them stigmatised. We don’t want them labelled as a scrounger if they are not able to work. If they are in work we don’t want the support cut.
“I was a youth worker. I was made redundant from the county council youth service in 2006 and that was the first level of what I remember as big cuts. Since then support has been decimated in all areas.”
I asked the magic wand question: if you could change one thing today straight away what would it be? Throughout our conversation John kept coming back to this theme. He mentioned the importance of the discharge planning service that organises a smooth transition from a hospital stay to your home. It sounds like simple admin but in Oxfordshire the nursing staff have had it added to their duties and the system is getting bogged down. He also mentioned incompatible computer systems that cannot easily share patient information between areas or the scandalous lack of information about disabled facility grants. There is money available to make alterations to disabled people’s homes that could give them more independence but people are not applying for it because they don’t know about it.
And then he described the ‘deprofessionalisation’ of the caring services. Disabled people are constantly being referred to local charities first when they have a need and jobs once done by trained professionals are now carried out by volunteers. In addition by the simple expedient of adding the word Assistant after a job title it becomes possible to employ a cheaper but less experienced version of a professional.
John was swinging the magic wand of fixing pretty liberally but at no point was there any specifically personal request or complaint about his own situation or health conditions. Instead he was describing a general deterioration in the quality of life for disabled people that is the product of cuts across all the service areas.
“That’s why it is so overwhelming, it is not one issue it is all around, it is not just your social care it is your independence. All of it is connected and it is very hard to get a handle on it because it is so overwhelming,” John said.
“One of the issues with social care is night support. They are talking about people being forced to wear nappies even though they are not incontinent because they are not going to help people to get to the toilet at night. It’s degrading. There is nothing wrong if you need a nappy but someone who doesn’t need a nappy being forced to have it as their only choice… That is the reality of now in Northamptonshire for many people. All of this impacts on your mental health. There is not a recognition of that. The huge impact. The stress.”
John knows people who would rather stay up all night than organise someone to help them get to bed if a regular carer has not visited. They would rather not grapple with a system they find hostile and confrontational. There are people who are not applying for support they are entitled to because they find the assessments a degrading experience.
As a former disability rights worker John has a lot of experience negotiating the application processes. He described helping a friend in an interview for a grant to help with transportation.
“There is this tricking of you, like: ‘How did you get here? Did you walk?’ That is just wrong, it is not a way to treat people.”
There is a heartbreaking truth underneath it all, especially poignant for a society that is starry eyed about its Paralympians and the reach for the stars ethic they embody. We like to think that as a society we want disabled people to be all that they can be but it really isn’t like that at all. The Paralympics is a kind of fantasy that papers over the grim reality.
In the assessment meetings and applications that unlock the empowering support for disabled people they must emotionally prostrate themselves before the funding dispensing authorities, highlight what they cannot do and stress the shortcomings of their personal situations. For disabled people whose everyday lives require a warrior’s relentless appetite for small victories just to make simple conveniences happen, it is a humiliating process.
“When you are growing up and you are disabled you want to prove that you are independent, you want to prove all the things you can do, all the positive things. The system turns it on its head,” John explained.
“You have to completely psychologically change your attitude and say this is crap , I can’t do this, I can’t do that. That is not good for your mental health. You are having to learn a different way of talking.
“I know people who are having trouble walking who are having to ‘end up’ in a wheelchair whereas for me a wheelchair is a liberating thing. It really enables me to be independent. It’s a good thing. I am not confined to the wheelchair.”
Perhaps the worst thing about the current situation at County Hall is that it has become all about the money when for John and other disabled people it is about so much more than that.
He said: “Disability is imposed on you by the way society is organised. I am disabled by society and the barriers that are created, the environment and now as I understand it, capitalism. I am non productive and all that. The Nazis called disabled people useless eaters.”
John Waves the magic wand one last time.
“Get rid of capitalism. That would reduce my disabling barriers.”
For more information about DPAC their email address is: firstname.lastname@example.org