Do Professionals Have Too Much Power Over Social Care Users?

While many disabled people are fairly independent of social care services, some of us require high support packages, and this means we need to interact with professionals, who basically assess and decide how much assistance and support we receive. I am very independent in the decisions I make and this is because of the support I receive, but this does not stop some professionals believing that either they are in control of every minute of my life, or there is not at least someone being my puppet master, ‘allowing’ me to make the choices I make myself.

This is an attitude I have encountered in many professionals, who assume for some reason someone else is controlling me, as having a speech impairment seems to mean to them I am not fully able to make decisions for myself, believing there must be a family member somewhere behind the scenes. I think this is partly because they are able to successfully control most of the users they are dealing with, or at least ensure users are managed by their carers, particularly if they are perceived to have learning difficulties. I think it is also because many professionals have low expectations of what people requiring assistance and support can achieve within a paternal system that assumes we need every minute of our day carefully managed and supervised.

New Labour’s Personalisation agenda for social care services, which has been continued by the Coalition government, was suppose to be an user-led revolution that was going to be a radical shift in power between service users and professionals, and a revolution to improve our choice and control. The basic problem however with personalisation was that it began as, and remains, a professional led exercise, despite claims that it was user-led, or even user-inspired. Disabled people and the independent living movement had already won the right to have a direct payment, instead of services, in 1996, which remains relatively unchanged.

For me, personal budgets, which some people rave about, are no more than an itemised bill, so people know how much their services cost, even when they have little control over the services they receive. It is an odd concept for public services, and there are few services where people need to worry about how much services cost. I can not imagine many people would be pleased to be informed about how much their hospital stay costs including their operation, even if they did not have to pay it themselves. As I write this, I realised personal budgets is a ploy to make people own the cost of social care in a way like no other public service.

The language of personisation is controlled by professionals, as well as the concept, and I fear that it was designed as a reluctant step forward, to prevent three steps forward, as an answer to the rising expectations of service users. The idea of choice and control are now overused and meaningless, especially when professionals are unwilling to let go of the power and give users the responsibilities they need to manage real choice and control. But letting go of power is very hard, especially when it is attached to your livelihood. My supposed dependency keeps numerous professionals in paid employment and therefore they will not be so easily prepared to make themselves redundant.

If we really want to change the power dimensions between professionals and users, then we need to firstly be honest about them, and stop pretending many users have a control over their lives, when that is not really the case. Professionals could become our advocates, supporting us to navigate our journeys as our running mates, as oppose to balls and chains slowing down our full inclusion into society as contributing citizens. With the support we require and choose, we can indeed take control of our lives,

from Simon Stevens


Do We Need New Disablism Laws?

The coalition government has certainly put disability top on the political agenda, both in terms of welfare reforms and social care. This has provided fresh motivation for existing disability activists to campaign for something better, as well as politicalising a new generation of disabled people who have a range of experiences and understandings of the issues as beginners, novices and experts. Some disabled people will understand the social model of disability (that disability is about environmental and attitudinal barriers faced by people with impairments), while others will frame it in terms of the medical model (disability is natural inferiority that needs curing or eliminating) because of their connection with health services.

What I often hear is a call for laws to eliminate disablism and give disabled people more rights, and I firstly wonder if people are aware of the many national, European and International laws that already protect the rights of disabled people. The Disability Discrimination Act was first enacted in November 1995, strengthened in 2005 and then incorporated into the Equalities Act in 2010. It may not be perfect but it is there and I am not sure many people are aware of it, or try to use the existing laws we have to their full potential.

While I appreciate and value the legislation we have to protect disabled people, I do believe it is only half the story. Any law is just words on paper if it is not properly implemented and that requires a shift in people’s behaviour, that will eventually result in a shift in their attitudes. I have realised you can mandate people to follow specific behaviours in the workplace etc, like the smoking ban, but you can not just change attitudes at the flick of a switch.

I think the answer to if we need new disabilism laws is no, because right now no law would provide the behavioural and so attitudinal changes we are all looking for. Instead, we need to support organisations and individuals to question and challenge their own behaviour and attitudes towards disabled people, through consultancy and training activities, as well as campaigning and other activities.

We need to see more disabled people in the media in a diverse range of roles and with a diverse range of opinions. The issues disabled people face, like incontinence, needs to stop being regarded as a taboo issue and dealt with on soap operas, chat shows etc in an sensible sensitive manner that is not just patronising pity. Disablism can only be broken down by normalising the issues faced by disabled people, and become an issue of general debate, like increased awareness forced marriages and breast cancer has helped raised understanding of race and gender issues.

I feel when of the greatest ways to end disablism would be to ensure inclusive education is the norm. While I believe every child should receive the specialist education they may require, that disabled and non-disabled children should share the same school gates, playground, and dinner hall if nothing else. Only when disabled and non-disabled children are together as a norm can the real prejudices towards disabled people be broken down and new understandings forged for disabled people to be considered true members of society.

No law alone can make one person change their opinion of another person, and just adding law after law to try to will not help anyone, and may actually cause harm and resentment. Instead, we need to get our hands dirty and actually step by step, person by person, create better understanding and behaviour, that could result in better attitudes if we play our cards right.

This requires a commitment to take action from everyone, without just relying on the law to sort things out, because that is not what laws are about. Any law merely creates the rules of the game but we must be willing to play to win. Ending discrimination for disabled people has no quick fix, and yet another law will not help us achieve it any faster.

from Simon Stevens


Supporting Outcomes Together

I have been a user of the welfare state and social care most of my life as well as being involved in its development in one way or another from many perspectives, and this has provided me an broad insight to its strengths and weaknesses, and how it could be developed for the benefit of everyone, providing a system suitable for the 21st Century.

This is why I am please and proud to launch “Achieve Support”, my contribution to the welfare and social care debates for disabled and older people. This report is my ideas for a single assistance and support assessment and allocation system and process to replace many of the existing funding streams aimed at supporting disabled and older people.

I believe there are too many schemes supporting disabled and older people, each with conflicting agendas, different assessment and eligibility rules, and cultural norms. This makes navigating the current range of assistance and support very complex and often stressful for everyone involved. A simple example of this is that the funding of my social care comes from 4 different pots of money, all of which have their own assessment regime, despite being used for a single purpose.

This is why I am proposing a new single system and process, overseen by a new national body, Support England, and delivered locally by local Support bodies. In examining how many of the existing systems work, and more importantly, failed to work, I realised this system had to be delivered locally, but built upon national standards. I saw how welfare benefits like ESA were being assessed too far from the claimant for there to be any trust or compassion. I also saw how many service users distrust local authorities in delivering social care because of the lack of any national framework.

The aim of what I am proposing is to provide a system where disabled and older people receive precisely what they need, based on their outcomes, related to their impairment related needs in a manner that is not label based. It will be a complex system to implement since it will require lots of new thinking and a major shift of culture for many professionals, as well as disabled and older people.

I want this system and process to succeed, and hopefully adopted by government after the election, because I think by being clear, accurate and firm on the small details, this is maybe the best hope we have to get the issue of assistance and support absolutely correct for a generation. I believe in ensuring disabled and older people, as well as other stakeholders, are actively involved in co-producing the system and process from the absolute beginning to ensure that they feel included and on-board, and that all their concerns are considered.

My report is aimed to be a starting point for discussion although I have looked at some of the fine details of how the system could work because I believe this is an implemented policy can be successful or disastrous solely based on the small details. I also believe that to achieve the system and process in the way I would like, to provide the cost efficiencies possible while maintaining it does not lose its commitment to being person-centred, in the way recent policies like personalisation have, will require great and strong leadership, and I am prepared to put my hat in the ring when it comes to that.

So I hope you will take an opportunity to read my report and to engage in the discussion that is the next step of a long journey to the successful of an assistance and support assessment and allocation service and process for disabled and older people that this country could be proud off as a beacon of good practice.

from Simon Stevens


Having a Speech Impairment

I think one of the most challenging parts of my cerebral palsy is having a speech impairment, because it challenges the people I meet everyday. I think for a number of reasons, its still remains a less socially acceptable difficulty, in comparison to using a wheelchair for example, because the inability of listeners to understand every word I am saying causes them embarrassment and makes them feel awkward.

But my biggest frustration about having a speech impairment has always been that it makes others assume I have learning difficulties, although in recent years I have realised it is not that simple. It is indeed true that as someone growing up, who was with above average intelligence, I hated the fact people often assume I had learning difficulties as they would talk down to me, especially when I was clearly the more intelligent person in the conversation. But I have realised that people with learning difficulties also hate being treated in this way, and that it is wrong for anyone to be patronised in a way I have encountered too many times to count or remember.

An example of what I am talking about in terms of what people with learning difficulties experience, and therefore people with speech impairments experience, is an allegation at the recent local elections that a prospective councillor questioned whether someone with learning difficulties was allowed to vote, asking them what they were doing at the polling station! This is sadly not surprising to me, and offers a taste of the prejudices ‘we’ face.

I seem to experience the most prejudices due to my speech impairment on the phone, a device I find stressful, even when my personal assistant is translating for me. The amount of times I have had people from big name companies put the phone down on me, because they were unwilling to try to listen to me, has been countless. What is more annoying is the fact they refuse to see this refusal to serve me as an act of discrimination in exactly the same way as if they had refused me from entering their shop!

And here is where we can understand the real prejudices many disabled people face, the fact that the prejudice we face is not even acknowledge as prejudice, since people were ‘only doing their best’ or ‘they are just ignorant’. I may receive a half hearted apology for ‘how I feel’, but I am not compensated for the distress caused, or are they prepared to it seriously enough to ensure it never happens again. Because while sexism and racism may not be fully eliminated, people know what it is and will name and shame those who are sexist or racists, prejudice towards disabled people is just beginning to be taken seriously, and we have a long way to go before society understands the prejudices and react accordingly.

But having a speech impairment is not without its advantages, the main one being the awkwardness others have when they are confronted with me often puts me in the driving seat as they are stunned with embarrassment, I call it the power of freakism, and its very handy when I need to take control of matters. I also think there is nothing more frightening then being confronted by an ‘angry spastic’ with a speech impairment, which is something that you would definitely wish to avoid if you can. And on the softer side, I can sometimes swear in more public situations as people either do not understand me, or have the ability to pretend they did not understand!

I think one of the earliest benefits I remember was in school when I put my hand up in class and gave the wrong answer, but the teacher misunderstood it as the right answer, which I would have no problem taking credit for. Whether it is right or wrong, we need to take advantage of what we have, not worry about what we do not have. If I weigh up the prejudices I have experienced, with the ‘perks of the job’, I am still owed much more than I have ever taken.

I believe that the taboos related to speech impairments and learning difficulties will slowly disappear as we are seen more in public and in the media, and this is why I am proud to do my part to push the boundaries by appearing in “I’m Spazticus” on Channel 4, and continue in my work to demonstrate having a speech impairment does not and will not stop me achieving what I want!

from Simon Stevens