Giving up my volunteers

As regular readers will know, since 2008 I have had live-in volunteers, 12 in total from countries around the world. What you may not be aware of is that in early January I ended this for a number of reasons I will discuss below, and started to employ traditional personal assistants at the weekends and evening, starting a new chapter after almost a decade of sharing my home with volunteers.

Like many things in my life, the volunteering scheme run by Volunteering Matters played an important role in supporting me to grow an develop into the people I am now. Having someone live with me providing me with the security I needed at a time when I felt vulnerable. It enabled me to build friendships with people I would not normally meet due to our differing backgrounds and in return, they have had the opportunity to get a real insight to living with someone with cerebral palsy.

I found it to be a great interdependent relationship where while they physically supported me, I could play the role of older brother and host. The best times with my volunteers were when they supported me with my travels, which I found very empowering and when the scheme worked at its best.

The volunteers were not always perfect and not without their problems but they were the right solution at the time. Each volunteer brought different qualities to the role and seem to play their own part in my development, even if it was how annoying they were made me more independent.

The core reason I gave up the scheme was that from this January they were no longer allowed to prepare medication in any project. Since this was the fundamental main reason I needed them, I had little choice to end my relationship with Volunteering Matter. I could have argued a solution but they were other factors that confirmed my decision.

I was annoyed at how their decision was simply announced without consultation or consideration. For me, it was as stupid as a hospital announcing their nurses will no longer handle blood. They gave no explanation to why they made the changes but I would suggest something went wrong in another project and they decided upon a risk evasive response.

Their decision came at a time when I was also reflecting upon the suitability of having volunteers in the for long term for a range of reasons. My need for stability and security had now been met in other ways and moving into a fully accessible ground floor flat in the centre of the city has provided me with more independence. I am not sure I wanted to continue trying to overcome the communication and culture barriers of having a volunteer in return for the support I now needed.

I also felt that Volunteering Matters decided to stop their volunteers managing medication was likely to just be a first step in ending providing support to disabled people generally because, in an era of rules and regulations, the projects had a level of risk to them the modern profit-driven third sector is not interested in. I had seen the organisation gradually lose its understanding and interest in these projects as staff committed to helping people with impairments had been replaced with third sector metropolitan bureaucrats.

It is the end of an era and a chapter full of wonderful memories and no regrets, but everything in life has a beginning, middle and an end. and this was my end for now with have live-in volunteers.

Everyone should get the real support they need

It is no secret that I am concerned at how Personal Independence Payments are regarded as the one and only solution for anyone with any form of impairment, which can indeed mean anyone. The rights to welfare agenda is based on a tragedy model of disability, where payment is offered as a pity motivated compensation to a situation that the middle class fear. Because it is offered to ease the conscience of the middle class, the idea of challenging who has a significant level of need to require the benefit, as well as its actual effectiveness in providing real benefit, is shunned.

I would argue that it is not about who should or should not receive the benefit, which is a random amount that bears no relation to specific needs, but rather how can we properly provide people with the support they require when they require it. While for some people, this would remain in the form of a monthly amount of money paid to them for specific extra costs, for others it is about the provision of specific services when and where they need them.

If we take the issue of travel anxiety, I would firstly never underestimate the relative impact this may have on someone’s life and ability to function. But providing them an unrestricted random amount of extra income for the rest of their lives because it is the right thing to do really going help them to improve how they manage their condition? I believe while PIP is sold in terms of meeting extra impairment costs, it soon simply becomes extra income that does very little to meet impairment needs. Its removal when an impairment situation has improved is therefore seen as a dent in their income despite no impairment costs.

The better solution for travel anxiety would, therefore, be more to offer an intensive course of counselling to identify the specific triggers of a panic attack and develop a bank of personally developed coping strategies. The anxiety may never be ‘cured’ but it will be better managed. If there are then any specific extra costs as a result of using the coping strategies, these can be considered and funding made available.

I believe meeting specific extra costs in comparison to someone’s peers as opposed to a PIP for all strategy is the only way to be fair to everyone, as opposed to making people with minor impairments the winners of the benefit system as the cost of people with significant and severe needs, who are slowly been pushed off the political agenda. But we live in an era of greed where people are only willing to see their need to be identified as disabled as something that as absolute as opposed to relative.

And it is the misunderstanding of disability that is worrying. As increasingly minor impairments are reasons to be labelled as a disabled person, with all the rights and funding attached to that, the perceived severity of other impairments is increased and the battle from minor impairments for unnecessary resources slowly and steadily is fueling the eugenics agenda few people will admit exists.

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Redefining Independence for Disabled People

I want to take a week off politics to talk about a new idea I have been considering regarding independence for disabled people. Independence is a confusing term in relation to disabled people. There has been two main definitions of independence.

The first definition can be seen as connected to the medical model of disability. Here, independence means being able to do everything for yourself like getting dressed and so on. True independence is actually impossible because it could include baking bread instead of buying it and walking instead of taking the bus. It is therefore defined within a level of social conformity and allowed a generation of therapists to enforce a regime upon people with impairments that was unproductive.

Many people with impairments did not agree with these definition and they redefined independence within social care to relate to having choice and control over how things in their lives were done. They believed it did not matter if they were unable to do things for themselves, as they could employ staff that they can control themselves, and the important point is that they are able to decide how they do things. This is the kind of independence I had adopted since I went to university.

Recently, I have been wondering if there is a third way of looking at independence for people with impairments. For many of us, there is always going to be a number of things we are unlikely to be able to do for ourselves, even with technology, and this is fine. However, improvement sin technology means there are maybe times we can be left for longer periods without a presence of personal assistance than we need currently.

Personal assistance is a great tool but it does involve an emotional and practical investment that can be exhausting and restrict how we are and how we feel free. Quality time on our own, free from anyone else, can be very good for our emotional wellbeing, Therefore by still ensuring we have the support we need, it is also important to exploring how we live and use technology to ensure we can have a growing amount of time that is truly ours.

I am very aware that this idea will be seen as a justification for ‘unnecessary’ cuts but I believe the notion of independence will show a new maturity by people with impairments in understanding the notion of independence. It is about getting what we want whether that requires personal assistants or having quality time to ourselves. It is a concept that also needs exploring when we look at the long term purpose of social care.

A user perspective of the Social Care Crisis

For the last few months, there has been endless talk within health and social care fields about a ‘social care’ crisis that reached fever pitch when the Chancellor’s Autumn Statement did not mention social care, let alone providing additional funding. Many people have commented on the situation but very few users have had a say, so here is my stab at it.

The first question to ask about the crisis is which one? Everyone has portrayed the crisis in their own way. I can think of at least four different issues that are portrayed as the crisis. The first is the potential collapse of the care home industry. Then we have the fact people with moderate needs are not receiving support in a traditional way. Next is the level of funding local authorities are not receiving to meet their current level of support provided. Finally, the last crisis is the delayed discharges in hospitals, particularly in A&E departments, that are being attributed to a lack of social care funding.

I would argue that there is a fifth crisis, which is what is the purpose of social care in the first place, but I will come to that in a bit. With all these different issues floating around, the next question is where should any new funding  go and here we have the problem. I believe with so many mix messages on what the crisis is, the Chancellor decided to avoid the subject as oppose to getting embroiled in the internal politics of social care.

I believe just more money is not the answer and that any new funding has to come with major reforms. Without any kind of reforms, the new funding will simply be absorbed without producing great improvements and the begging bowls will quickly come out once again. But before we can have major reforms, we need to know what the purpose of social care is as we go forward.

And here as where my viewpoint of a service user comes in. My background is independent living, which is also in existential crisis, and a belief in social inclusion for everyone as contributing citizens. I believe the next generation of service users of all ages are going to be as proactive as myself with higher outcomes and expectations. They are not going to tolerate a continuation of passive and disempowering services designed to please their families more than themselves.

I also believe world economics have changed forever and that social care is never going to receive the funding required to maintain the outdated care system we currently have, where even its vanguard services is rooted in passivity. It is time for the many social care commentators to stop asking for something that is unlikely to happen, and start working on what reforms are needed to design a first class modern social care system within the resources available.

There is a lot of talk and self-congratulation  about  coproduction with service users in the design of some social care services, but it has been non-existent when it comes to the funding crisis. Yes, there has been a lot of feeling based research on what users think about social care, but users have never been asked about the in-depth issues as equals to other professionals. Even the Independent Living Strategy Group, headed by Jane Campbell, has decided it is not interested in the views of users, only asking organisational representatives to join and debate our futures without the expertise of users with many more years of experience of the issues.

The endless talk of crisis can also be seen as a fear of the changes needed in the social care sector to meet the real requirements of the next generation. Until the sector has a whole can come up with some consensus on how any new funding would be spent to reform social care, it is unlikely to get the respect from the Chancellor it has so desperately been craving for.


Impairment-related Assessments should be about removing barriers

It is very easy to complain about how a system is not working but it is much harder to come up with new solutions to replace broken ones. It is also easy to talk about rights but much harder to ensure any system implement rights on an individual level, providing real benefit as oppose to simply political analysis. I believe in looking forward and having a go in coming up with my own ideas on how to do things better.

In this context, I have given a lot of consideration to how I would design an assessment system designed to enable people with impairments to have what they need when they need it. Such a system is always going to be complex because of the many factors involved. My focus would be on removing individual and specific barriers to outcome related activities, as opposed to either being label based or focusing on what someone generically can not do, like having a speech impairment.

This means going through a person’s daily living routine as well as a number of other activities including work and establishing what impairment related barriers they face. Some barriers, like not having a dropped curb at a specific place on their route to work etc, would result in a community solution, benefiting others as well as themselves. Other barriers may be overcome by the awareness of specific mainstream solutions, like online food delivery services.

Many barriers may be overcome by the use of assistive technology large and small from electric wheelchairs to bibs. The final solution to consider is personal care, including the use of personal assistants. The reality must be that because of the long term costs involved in providing personal care, the suitability of other solutions must be considered first because being value for money has to be a goal.

A final set of barriers to overcome is the extra costs of having an impairment in comparison to that of people without impairments in the same social setting. This would include extra washing, extra heating, extra hospital parking costs and so on. The key here must be reasonableness and fairness in comparison to others.

The catch to all this, if you wish to see it in that way, is that removing impairment related barriers is not about having a completely stress-free life. The government’s motivation to remove individual barriers has to be to expect people to contribute to society as much as they are reasonably able to do so. The barriers to opportunities should relate to the opportunities available to them if they did not have an impairment. This means that if someone wants support while they are on holiday, they need to be able to afford the normal costs of that holiday.

I believe meeting individual barriers is the way forward. It will enable an assessment to be transparent as the assessor needs to state how they propose an individual overcomes a specific barrier, even if it is not the solution the individual would have wanted, and many proposed solutions may not require funding from the government directly.

The barrier to this way of assessing people is likely to be the current attitude of those being assessed, especially if they are newly impaired. Their newly found impairment identity is likely to disrupt the process as they demand recognition of their negative feelings towards their impairment, being unable to easily think in terms of overcoming barriers. This would require a more sympathetic dialogue that enables people to realign how they feel about themselves. Without this, my assessment system will quickly become as toxic as the current one, or indeed any further one proposed by others.

My proposed assessment system will require deep changes in the dialogue between state and individual to succeed but if it was properly implemented, it would offer all people with impairments their best hope of full and meaningful inclusion within a good society.

What could adult social care look like in 2046?

There is currently a lot of talk about adult social care and the level of funding it receives. Clearly, more money is needed but I feel it is important that new monies are allocated in the most effective way, and that any ineffective or wasteful spending is reviewed. It is important that the national government and local authorities set the priorities with other stakeholders in an era of conflicting vested interests.

Social care for adults is a relevantly new and evolving concept that has moved from large service-led contracts towards meeting the needs and outcomes of individuals. It however remains complex to determine what levels of support people should receive to create a system that is fair to everyone, balancing entitlement with needs and outcomes.

If we now fast forward 30 years, leaving the current issues aside, let’s examine what social care could look like? The simple answer is that it could look like absolutely anything. Unlike health, education and collecting taxes, the demands and supply of social care is always changing. Care homes are a relevantly new invention that could easily disappear if the demand for this ceased. Improvements in health could change the game completely in ways we can not currently understand.

I think there are two factors that will play a big part of shaping social care; these are technology and public attitudes.

We live in a wondrous time where technology is increasing our opportunities and changing how we live at a speed previously unheard of. When you consider smartphones, tablets and smart watches have only existed for no more than a decade, and already started the collapse of print media and traditional television to name but a few consequences, you can see its impact.

This means technology could radically and quickly change the way social care is delivered in a manner we can not even begin to predict. Channel 4’s Humans have shown one future vision of social care,  where human staff are replaced by synthetics. But it could be more subtle like the rise in online delivery services. Individual users are likely to drive the demand to use new technology, especially if it is delivered in a mainstream way.

Public attitudes towards using social care are likely to change as social care is normalised into the way many people live, especially in their ‘third age’. Currently, social care is delivered to users who seem happy to take up a passive role of dependency. Older people  especially still fear challenging authority and appear grateful for anything they receive.

In 30 years, we will have a generation of older social care users with much higher expectations of what social  care should deliver, and will be unwilling to accept poor service, having the skills to cause major trouble to those suppliers who mess them about. This generation is likely not to accept being patronised by their adult children, who will not be allowed to make decisions for them. This means a lot of current telecare solutions designed to check ‘if mum is okay’ are likely to find themselves smashed up and binned. For this internet savvy generation, social isolation is unlikely to be an issue for professionals to concern themselves with.

Potentially a lot of the current perceived youth issues like drug and alcohol abuse could become issues for this generation, radically challenging the notion of passive compliant users as social norms change. It is therefore important those responsible for future-proofing their services understand the needs of future users. Unfortunately, I fear a slow pace of change will create a disastrous mismatch between demand and supply.

The key to the future of social care is understanding it could easily change its shape beyond the control of anyone. Those who bank on one specific solution becoming and remaining top dog may end up being very disappointed.


Changing the Conversation on Health and Social Care

We currently live in an environment of label based entitlements. By this I mean many people with impairments feel their labels mean they deserve specific benefits and support regardless of what they may actually need, and with little regard to what having the support would achieve. The fight to obtain the support is seen as the end goal, where what happens next is not considered. This creates passive recipients of welfare, and supports keeping people disempowered and excluded from society.

I would like to change the conversation, moving to a point when people ask for what they need to perform relevant activities that allows them to meet their outcomes. In the spirit of ‘best value’, they may need to explain why one more expensive solution is better able to meet their needs to deliver outcomes than a cheaper solution.

So instead of saying I deserve an electric wheelchair because I have mobility issues, I would say that having an electric wheelchair would allow me to go out to work, and a manual chair would be unsuitable as I can not push myself. It would clearly not be that simple but it gives the general idea.

It is easy to say ‘I need that support because I have extra costs’ but I believe it would be quite revealing if everyone requesting support had to explain what support they feel they required and what they intend to do with that support. Two people with the same impairment labels, like diabetes or depression, may have different needs met with different solutions for different outcomes.

For this way of thinking to work, advocacy would need to be put in place to empower people to understand their outcomes and needs, so they can be an active partner in negotiating solutions from relevant bodies. It would mean a move away from passive welfare and towards proactive and meaningful support,

The greatest barrier to this is the mindset of users, professionals and the public. An example of this is the way ’15 minutes calls’ are portrayed. The public outrage is based on the misguided assumption everyone who requires social care can do nothing for themselves, and are simply passively going along helpless without their ‘carers’. The reality is everyone needs are different and some people may need or even want 15 minutes for simple things like putting their shoes on. While 75% of local authorities may indeed use 15 minute calls, there is no data on the total percentage of users who have them, which is likely to tell a different story.

The other thing about 15 minutes is how they are used. Clearly, if someone needs help with having breakfast, preparing a bowl of cereal, and when the carer arrives they are still in bed halve asleep, waiting to be directed by the carer like a young child, then 15 minutes is not going to be enough. However if they are done as much preparation as they can to have breakfast, then 15 minutes will be plenty of time, possibly allowing assistance with other tasks. Again, it is moving from a passive perspective to an active one.

The system is currently broken but few people are willing to offer alternative solutions. My solution is for us to change the conversation from passivity to proactivity and empowerment.

Do carers really know best?

I dislike the term ‘carer’ for a number of reasons as well as the whole carer rhetoric, although I am quite aware that this is an sensitive subject for most people.  Throughout my life, the term ‘carer’ has been used to undermine my intelligence as someone most people regard as needing someone to look after their affairs, which is not the case at all.

The typical image of an informal carer is the spouse of someone with dementia who is portrayed as isolated and alone, as their partner is portrayed as lacking the ability to make decisions or contribute to the family. This picture may indeed be accurate in some cases but as the awareness and identification of carers has increased, so has the range of situations.

But what is worrying is that in many cases, individuals and professionals are automatically identifying family members as ‘carers’ even when there is not actually a caring role being performed. This means spouses, parents and siblings of sick and dysabled people are automatically being labelled as carers . Even young brothers and sisters of dysabled children are being labelled as young carers simply because they are related.

So what is the problem with this? Well, amongst the rights carers have is an unwritten right to make decisions, often very important ones, on behalf and for the individuals they look after, even when they have no legal right to do so. More and more  health, social care and other public services are simply taking the carer role at face value and relying on what the carer wants unchallenged, because it is easier.

When you add the fact the public seess carers as unsung heros who save the government money, a message cleverly crafted by the carers movement, I hope you can see there is a problem here. Your parents, partners and siblings can be wrong and can even hate you, but call them carers and everyone things they are wonderful and know best.

This is why I am on a mission to decare our nation and reclaim families as families. What I mean by this is  that the carer rhetoric has destroyed families, where power dimensions have been perverted. What we need to do is to focus on  family cohesion, ensuring a family can remain a interdependent unit.

A part of this is acknowledging not everything family members do for each other, like cooking a meal, can be regarded as an act of care, but rather an act of interdependency. Informal carers often spend far less time performing what social services would see as care tasks than they assume they do. Being a couple or family generally involves housework and other tasks.

Another issue is understanding those who are perceived as being ‘cared for’ often have a lot to contribute to the family, and it is important to recognise and support this interdependency, where people can be seen as caring for each other in different ways.

If we carry on supporting the carer rhetoric than we are legitimating a level of subtle abuse of choice and control. Family members who play a significant role of a sick or dysabled person’s lifes, whether as a child or adult, have to be equally trusted and distrusted as paid care workers, this is simply what I have always asked. People suggest that my healthy distrust is somehow personal,, it is not, it is a commitment to proper safeguarding of those more prone to vulnerable situations.

Do carers really know best? No, they are simply humans like the rest of us

Is ‘User Involvement’ used to keep people disempowered?

I have been involved in User Involvement in one way or another for the last 20 years and it is important to say I am not against the principle at all. However, a few weeks ago I briefly saw a photo of a slide of a title of a paper presented somewhere by Peter Beresford, and it suddenly made me realised that the way user involvement is often implemented is a con, simply designed to keep people disempowered.

After 25 years experience in any field, I should be at the top of my game and paid accordingly, but when it comes to dysability, the being paid part is not there. If I was non-dysabled, then certainly the big fat salary would be on the table. But as a dysabled person, I am supposed to feel grateful that I have a voice in issues that affect me.

‘Service Users’ are starting to be paid for their time but getting paid as an ad-hoc contributor is time-consuming and bureaucratic, and most importantly not comparable to my non-dysabled peers. I have sat on too many committees where I have the greatest experience and expertise, but I am the only one not being paid a middle-class salary.

Is user involvement simply tokenistic? By calling us users rather than partners, it is simply a way to drain our expertise from us, often to improve their own career prospects, without paying us? And who is controlling the agenda?

I have reached the conclusion that user involvement is now simply an exercise to disempower us, by ensuring the professionals keep the control. And I fear because ‘user-led’ organisations have carved their survival by paying the user involvement game, reinforcing dysabled people as unpaid experts, they are not the way forward.

Dysabled people can no longer be perceived as the experts simply because they have impairments. I also do not believe anyone can represent ‘all dysabled people’ since it is an issue of understanding, not a democracy. We need dysabled professionals who are experts in dysability issues, and paid properly to convey relevant information to organisations who are required to know about these issues.

Lets move beyond user involvement, and start having professional engagement on dysability issues so those of us who know what we are talking about can be properly paid for our experience and expertise.


– If you like what I say, have a look at my website at or follow me on twitter, @simonstevens74

Campaigning Is the Modern Tear Jerker

There was a time, before the 1990s, where all disability charities had to do to raise money was put a disabled person, ideally a child, on a poster looking pitiful and describe how miserable their lives were to be on a winner. Then disabled people started to have a voice and made it very clear that they would not tolerate this abuse of their portrayal, and so these charities had to come up with a new way of promoting themselves, which was campaigning.

Campaigning started as a great fresh way of doing things but it has now become a problem in itself as everyone uses it. Campaigning is a way of charities to claim authority over an issue, and be a voice for a section of society, controlling their political contribution, often without the involvement of those they purport to represent, simply to be a ‘tear jerker’.

If we explore the news nowadays, a large proportion of it is simply controlled by charities who promote their campaigns as facts. If people knew that the campaign teams of many charities were made up of twenty something politically correct graduates who decided their campaigns on a whim, maybe this so-called news could be put in context. These teams think they can simply write a basic and leading questionnaire, promote it on social networks to those who will agree with them, especially with the leading questions, and then dare to report it as facts on the whole population, simplifying a complex issue, for the benefit of raising money, simply to pay their wages, and not help anyone else.

And the problem is while every disability charity claims to be the voice of disabled people is that they can contradict each other and here is a perfect example. Leonard Cheshire Disability has recently made a name for itself for trying to make 15 minutes social care calls illegal because they regard them as indefensible, declaring war on anyone who disagrees with them, which I do. While they use the image of a helpless isolated person having a get up call to win their argument, the fact is there are plenty of examples where a 15 minutes call may be suitable and desirable, which they will admit when pushed. But going against the spirit of personalisation, they want hours taken away from those with higher support packages to pay for 30 minutes calls to be imposed on people who may just need or want 15 minutes.

At the same time, Scope has been campaigning for people with moderate needs to have the level of social care they supposedly need or maybe want, although they fail to mention that could include people with broken legs and fails to take into account the use of technology or enablement. If Scope got their way, logic would dictate that those with moderate needs would need, want or prefer 15 minutes calls to assist them with the small amount of help they need. But Leonard Cheshire Disability is campaigning against 15 minutes calls and so by default campaigning against the needs of people with moderate needs.

Both charities claim to have the moral high ground and be the voice of disabled people, but can they both be right? I believe their true agenda is to bring more money into the national social care budget, so like the other providers, they can raise their care fees and so their ‘profits’, that exist in all but name, without actually improving the quality of service by helping more people with moderate needs or reducing the number of 15 minutes calls, probably increasing them. But because their call their marketing and political lobbying campaigning “on behalf of disabled people”, the public sees something so wonderful that it can not be challenged.

I believe charities will never be forced to be more accountable and change this abuse of the people they claim to represent until the general public properly understands what 21st century charities are and what they actually do, or don’t do, like help people. A perfect example is I am sure the NSPCA does not have a bank of trained volunteers working on Christmas Day peering through windows to make sure all the children in the country are having a good Christmas, but we are led to believe they are the only organisation that protects children, which begs the question of why do we have government funded children social service departments doing the same thing?

We should all know there are lies, damn lies and statistics, but that does not stop charities fooling the public with their fancy charts and misleading headlines as they use campaigning simply to keep themselves in business for the benefit of themselves, and often no one else. It is time for charities to stop campaigning, blaming the government for everything, and start going back to doing what they are supposed to be doing, which is helping the people who actually need their assistance.

– If you like what I say, have a look at my website at or follow me on twitter, @simonstevens74