Not letting a serious crisis go to waste

By Neil Crowther

In this guest post for Inclusion Europe, Neil Crowther argues that, rather than being a victim of austerity, new thinking on independent living can offer ‘a plausible way forward, via which the pursuit of disabled people’s rights to full participation can be allied to the search for more effective and sustainable ways to draw upon and make good use the full range of resources around us.’  


Legal capacity & authoring one’s own life

By Lucy Series

Independent living is often misunderstood as being about ‘life skills’, or a particular service model where support is purchased separately from housing, or imposing upon a person a life which looks ‘normal’.  Decades of campaigning and scholarship tell us that this is not what independent living is about.  It is – as the title of this blog so eloquently puts it – about authoring one’s own life.  This right to self-determination is embedded in the right to independent living in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which reads: ‘Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement’.  One important determinant of being able to choose one’s place of residence, and where and with whom one lives, is ‘legal capacity’.

Legal capacity basically means one’s decisions being treated as legally binding in the usual way.  So if you enter into a contract, you have to uphold your end of the bargain, and if you say no to some offer of treatment or care and support, you cannot be forced to accept it.  In England and Wales, the Mental Capacity Act 2005 (MCA) says that people can exercise legal capacity only if they have ‘mental capacity’.  Mental capacity means being able to understand the information relevant to a decision, to retain and use and weigh that information in order to make a decision, and being able to communicate it.  Incapacity is not supposed to mean making ‘unwise decisions’, but it can be extremely difficult to tell these apart.  A person should be presumed to have capacity, but if it is shown that they ‘lack capacity’ then others can make best interests decisions on their behalf.  Those making best interests decisions should consider – but are not bound to choose – the least restrictive option.

The MCA is often described as being about empowerment, but ultimately it is still a tool which legislates for others to author a person’s life, in their best interests.  Article 12 CRPD says that people with disabilities should be able to enjoy legal capacity on an equal basis with others and that people should be offered support to make decisions for themselves.  Examples of support are wide ranging.  It might involve a person being able to appoint a third party to be legally recognized as a supporter, so they can have access to the information they need to help a person make a decision for themselves and communicate that decision to others (e.g. British Columbia, a new Bill in Ireland).  For people with impairments which make it hard to discern any decision at all, Bach and Kerzner have been developing an approach to legal capacity which is based upon a person’s life narrative, with those who know them best taking a leading role in interpreting it.  Supported decision making projects in Sweden (doc) and South Australia have been delivering resounding results in enabling people to author their own lives.

It is increasingly thought – even amongst the judiciary – that the MCA may violate Article 12 CRPD as it offers few mechanisms which put supported decisions on a legal footing and it may also be discriminatory.

Despite this, however, lots of people are using the MCA in progressive and empowering ways, supporting a person to make decisions or making ‘best interests’ decisions which accord with the person’s own will and preference.  The Court of Protection has delivered some excellent rulings in this regard, emphasizing that people with disabilities should be able to make risky or unwise decisions just like everybody else (CC v KK; A Local Authority v TZ) and asking ‘What good is it making someone safer if it merely makes them miserable?’  The ruling in Neary v Hillingdon sent out a resounding message about the importance of listening to what the person themselves wants, and honoring the relationships and lives where they thrive.

But disability campaigners and scholars need to start thinking more critically about the MCA, and start taking seriously the criticisms leveled at it from the CRPD.  They need to shed arrogant assumptions that the MCA is world leading in progressive legal capacity legislation and start looking at what is happening elsewhere.  Not all Court of Protection judgments are such a resounding endorsement of authoring one’s own life, and some even use ‘independent living’ as a justification to impose upon people choices which they do not want.  A person’s own will and preference is an important factor in a ‘best interests’ decision, but it is not paramount.

A recently constituted House of Lords Select Committee on the MCA has heard from every single witness that whilst they think the MCA is an empowering piece of legislation, it is not well implemented and the ‘culture change’ has not happened.  Let us think about what this means for a minute.  If the MCA was a product on Amazon and every single review said “I bought this product because I wanted to be empowered, but when I got it home it didn’t work”, would you buy it?  No.  You would look around for something else.

The universal praise for the MCA may tell us something else: that the MCA is a two-faced piece of legislation.  On the one hand it is committed to ‘empowerment’, ‘autonomy’ and ‘self-determination’ through clauses intended to limit loss of legal capacity and consider a person’s own views.  On the other hand it is committed to paternalism, through providing a legal tool to override that person’s choices in their best interests.  The concepts of ‘capacity’ and ‘best interests’ are so nebulous, fluid and open to interpretation that when we look at the MCA we see what we think ‘mental capacity’ and best interests look like.  If others construct those differently we think there is a problem with their interpretation not the Act itself.   It is like a Rorschach test: we project onto it what we want to see, and so everybody goes home happy, having seen different things in it.  But is this ‘empowerment’, if the legislation is only as autonomy-promoting as the person operating it?  What realistic recourse does a person have if they are denied the opportunity to author their own life?

About the author

Lucy Series is a research associate at Cardiff Law School.  Her research interests include legal capacity and community care law.  She is currently working on a project funded by the Nuffield Foundation about the Court of Protection.  She writes The Small Places blog.

Independent living – making the future together

By Martin Routledge

These are incredibly worrying times for disabled people.  Progress towards independent living is at greater risk than it has been for decades. People who care about this must act, but what to do?

Some questions I continually ask myself are: Why are the conditions not in place to support independent living? Why have attempts at legislation failed? Why does no political party properly support independent living? The answers must primarily be small “p” political.  Disability remains marginal in national and local political narratives – it is not raised in most canvassing discussions on the door step at elections. It is not the subject of heated discussions in the café or pub. Disabled people’s organisations  remain marginal in most communities. Opinion polls and attitude surveys show us that the population doesn’t buy the social model yet (to say the least)  and is much more supportive of disabled people in some circumstances than others – mostly people considered “deserving” and even then quite conditionally.  Responses to disabled people tend to prioritise institutional and professional “solutions”. Attempts to “personalise” public services though worthwhile and potentially positive are inevitably  limited in scope and run up against system forces and cultures that limit power transfers. These are not the conditions which will easily generate national and local action to achieve independent living.

How can this be changed and how quickly? These are tough questions.  Given the current gap between public, political and policy positions and the achievement of independent living, strategic shifts are hard to achieve. Power is dispersed. There isn’t a single actor (usually we think of central government) that could just adjust its behaviour and bring independent living about. We need to think about  a combination of tactical and strategic activities running in parallel that might achieve positive short term developments which can support and link with more major shifts. We will need to be principled, pragmatic and opportunistic all at the same time.  The threats currently faced can provide energy, determination and drive the construction of alliances.

The political activity and change efforts I’ve been involved in and observed over the years suggest that there will be a need for a number of linked strategies carried out by a wide range of people, sometimes tightly, sometimes loosely connected. These groups won’t always find it easy to agree or co-operate with each other and will differ on significant things.  Alliances will be complex. Some of us might not be accepted as allies by others and sometimes some of us should get out of the way of others. It will be important though to generate a series of both specific and broader activities that move the position on to build the right conditions as quickly as possible. Some of these (not necessarily delivered in rational or incremental order) will be:

  • Development of strong and powerfully communicated narratives that demonstrate why independent living is the right thing for disabled people and society. Communicating the social model in terms which are meaningful to a range of societal groups.
  • Disabled people develop a set of key principles and elements in the form of a new or adapted IL statement/agreement that could get wide sign up while not diluting core principles
  • Campaigns – Some targeted against policies that undermine IL and especially that can resonate as unfair with the wider public or key influencing groups . Also positive campaigns  using the strong clear narratives which can engage key groups
  • Development of exemplars and persuasive examples of independent living in practice based upon the narratives  – where possible across whole localities and systems. Taking advantage of developments  such as local health and well-being boards  to get independent living supported within strategies and priorities (directly where possible, indirectly where necessary)
  • Find ways to generate investment in national and local leadership (in its broad sense). Equipping people will the skills and networks to generate positive activity and building peer connections.  Where possible link disabled leaders and progressive allies in public services at local level to support exemplar development
  • Support local groups access to the information and advice that can assist their efforts to defend and extend elements of independent living locally
  • Lobby political parties nationally on key policy positions – tactical and strategic lobbying on specific and general policy. Build towards key positions in party manifestos
  • Strategic litigation – using existing, or forthcoming legislation to help build case law, defend existing rights being denied in practice
  • Enrolling of key groups and organisations that influence systems and practices – looking for “convergence” with professional and provider bodies, academics, journalists etc. This might include full sign up to IL and associated action or it might be partial and incremental – to be built upon. Use this to get IL or key elements into important policies, publications, stories, protocols, work-streams etc
  • Entryism – getting people who are strongly sympathetic to IL and who can influence positive strategic or tactical action into key roles in national and local government and other organisations. These might be permanent or temporary
  • Legislation. At some point national legislation, linked to international law, which enshrines enforceable rights to IL. On the way to this, more tactical helpful pieces of IL specific legislation, other legislation that helps shifts towards IL (or at least doesn’t create barriers).

How might all this activity be co-ordinated, driven, supported – is this even possible or sensible? It strikes me that some form of organisation is definitely needed. As a minimum I would suggest a coalition of disabled leaders and their organisations  to generate a core mission and agree key activities in a plan. Such a coalition could be supported by a wide range of other groups and individuals based around sign up to the mission and accepting the leadership of the coalition. These groups and individuals could provide  a range of supports: resources, skills, specialist advice, connections, local opportunities etc. In Control are very keen to play whatever role we can to support such a development.

 About the author

Martin Routledge is Head of Operations for In Control. Before joining In Control most of his work has been with local and central government. His main interest has been in efforts to shift policy and delivery of public services in directions that support independent living and inclusion – there is a long way to go!

Strategies for independent living – Part 2

By Simon Duffy

In Part 1, I said that despite the many deep challenges there are some signs of hope. But, if we are to take advantage of these new opportunities for positive change, then the strategies we pursue must evolve.

One of the most positive recent developments has been the emergence of a new generation of disability leaders. These new leaders move quickly, mobilise and can produce work of stunning detail, originality and force. We are only at the beginning of discovering what these new leaders will achieve.

Also, despite many problems, the public are waking up to the advantages that independent living offers: older people wonder whether they are really destined for institutional care, people with mental health problems want to take control of their own recovery, people rethinking education or healthcare understand that we must start with the individual, not services. Independent living offers an intellectual framework and real life experiences that are relevant to millions of people, outside the ‘obvious’ disability community.

This is an opportunity, but it is also a challenge. Personally I feel that we have all been weakened by the system’s need to divide us all up into little groups, with our own different agendas, jargons and special interests. Too often one group finds itself distanced from another group by misunderstandings or modest differences of opinion. We lose sight of our collective strength, we fail to find ways to build common cause, a shared language and stronger political demands. We complain about the labels that professionals have dreamt up, but then we find comfort in those very labels and the peer groups that they create.

This is not an easy problem to solve. I suspect identity and peer support is so important that it is not possible nor desirable to just merge diverse groups into some bigger super group: disabled people plus. For example, I do not think we can just say to older people: ‘Get over it, you are disabled!’ If there is a way forward I think it starts at the level of the individual. If we can build bridges with others, find common cause, take the first risky step of trust, then we might find that we can achieve more, and still be ourselves.

I do not think there is some simple trick to this – a quick fix – I think this is about personal integrity and our willingness to try and heal wounds and divisions.

Another advantage that we have is that government is stupid. I don’t mean that this government is stupid – some of them are wicked, but they are not stupid. I don’t mean that politicians in general are stupid – they are not, many of them are very thoughtful and intelligent. I don’t mean that civil servants are stupid – they are usually very bright. What I mean is that the government, as an institutional process, is stupid.

In one sense, government does not even really exist. In its place is a complex array of individuals, groups, professionals and advocates, all pushing and pulling to look after themselves, their interests, their passions. This is only a problem if you want government to automatically do the right thing – just because it should. Once you see that this will never happen then you must begin thinking about how disabled people can advance their own interests within a complex political process. This is not impossible.

Unfortunately some of our previous strategies here have not worked. Asking government to fund advocacy, commissioning charities to provide services, setting up an Office of Disability Issues, funding quangos to advance ‘personalisation’ – these have not been great strategies. We find in fact that the layer of intermediate organisations, the very organisations that one would expect to stand up for disabled people against government, has failed to deliver. When government decides to target disabled people then it can quickly silence or occupy any organisations it controls. In the future we must build organisations and alliances that can maintain their integrity in difficult times and that know how to put pressure on government, rather than just fold under pressure themselves.

Disabled people are quite capable of defining the policies and laws that will serve them better, we just need to start getting serious about achieving real change. That’s politics. And if disabled people want to get serious about this then they will also need to get serious about building the kind of alliances that achieve serious political change. That’s politics.

If we return to the three foundations of independent living – rights, money and presence – then we can see that, while our ultimate goal of independent living might be clear, we may need to think differently about how to achieve it.

Disability rights are not distinct rights. They are a lens by which disabled people can look at their human rights. Making progress to advancing disability rights may also be best advanced by asking how society might be changed to better to respect our human rights – for all of us. This raises fundamental constitutional issues and challenges many of our assumptions about how the welfare state is organised.

Just one of the many problems we will need to address is the relationship between central and local government in the delivery and protection of our rights. Often the disability movement has called on central government to bring local government ‘into line’. However, as a matter of historical fact, many of the reforms and changes that have benefited disabled people, were developed by partnerships at the local level. You cannot always have your cake and eat it too. If we want innovation and inclusive communities, then local government must be enabled to play a constructive role. The UK is the second most centralised welfare state in the world (after New Zealand, which has a population of 4 million) this centralisation does not serve us well.

Too often we seem to try and tackle poverty for disabled people as if poverty for non-disabled people doesn’t matter. This means we fail to make common cause with others trapped in poverty. It also means we encourage the DWP to build special benefit silos and to fund organisations like Atos to police them. We may get a slightly better deal for disabled people than people who are just workless, homeless or disadvantaged in some other way – but is that our real goal? Some disability groups are talking about a basic income for disabled people – but why wouldn’t we be campaigning for a basic income for everyone?

When we think about segregation it is worth remembering that many of those who are most segregated are people with learning difficulties and people with mental health problems.There are 21,000 people sent to live in institutional out of area placements, costing billions of pounds. Is this not a campaigning issue for disabled people? Where is the alliance between the disability movement and those of us trying to help close the likes of Winterbourne View? Are some disabled people too disabled to be included in the disability movement, let alone the community?

Here are two final thoughts.

Several years ago I attended an event run by the Disability Rights Commission on citizenship. There were no people with learning difficulties present and it seemed to me that the assumption of many at that meeting was that, while most disabled people were certainly citizens, they were not sure about those people with learning difficulties. I found that shocking and upsetting.

There are about one million people with learning difficulties, people who are citizens, who do contribute and who share the same rights as everyone else. It is critical that the disability movement makes them central to its thinking. Otherwise we accept an apartheid, where people with physical disabilities are in, but people who need assistance with communication or decision-making are out. This disability apartheid is not only wrong it weakens us all.

Finally, in Australia today they are beginning the process of implementing an ambitious system of disability funding which will provide clear entitlements, no means-testing and individual control. But how did they get there? This system was lobbied for by an alliance of disabled people and service providers under the banner of Every Australian Counts. Australia will face many difficult challenges before it can declare its system a success, but there can be no doubt that it was a political success. Building alliances and focusing on universal rights works. At the last Australian election both main parties backed the scheme and the hypothecated tax rise used to introduce it was popular with the general electorate.

It is time to be creative, to think big and to build new alliances. We cannot achieve independent living on our own and the benefits of independent living are for everyone, not just for disabled people.

About the author

Simon Duffy (@simonjduffy) is Director of The Centre for Welfare ReformChair of the Housing & Support Alliance  and policy advisor to theCampaign for a Fair Society.  His passion is to see people with learning difficulties recognised and respected as full citizens. He is author of several books including Keys to Citizenship and most recently The Unmaking of Man

Strategies for independent living – Part 1

By Simon Duffy

The history of Independent Living in the United Kingdom is full of hard won victories and frustrating set-backs. Often, just as a sign of progress appears, we suddenly find ourselves back having to argue for the most basic human rights and having to assert – yet again – that disabled people are people, ready and willing to play a full part in community life.

It seems to me that we are at the beginning of a new era in the fight for independent living and this is a good time to reflect on some of the lessons we can learn from our history. I think that Neil Crowther should be thanked for creating a forum for reflection and debate.

Looking back, it’s important to go a long way back. In my recent book The Unmaking of Man I tried to understand the factors that allowed Hitler to murder about 250,000 people with disabilities – not as just one part of the Holocaust – but as the first essential step in the Holocaust. Before Hitler was able to murder Jews he had to spend many years stripping the Jewish people of their legal rights, their economic power and their physical presence in community. He faced no such obstacles when it came to disabled people – they had already been stripped of rights, money and presence – the institutions had already prepared disabled people to be the first victims of eugenic murder. And these institutions had been set up by doctors and others from the professional classes, decades before Hitler.

The things Hitler worked to destroy – rights, money and presence – remain the critical foundations for independent living. Independent living is impossible without appropriate legal rights, economic power and active participation in community life. In each area we can see that, while the language of independent living has been adopted by government, the substance is missing.

For instance, the UK ratified the UN Convention of the Rights of Persons with Disabilities in 2009, but, in reality, the legal rights of disabled are an inadequate mess. Take just one example, the right assistance to live an independent life. It is impossible for many people to live an independent life when eligibility criteria are set so high that one needs to be in desperate circumstances in order to receive support. It is impossible to take seriously a social care system where local authorities cap funding at residential care levels, when we know residential care is not what people want and is associated with multiple forms of abuse. It is impossible for independent living to flourish when so many disabled people must pay the vicious disability tax – which is disguised as ‘community care charging’ or ‘co-contribution’.

And so many disabled people, especially those with the most significant impairments, live in poverty. This poverty is not just rooted in an inadequate benefit system, it is also found in our support systems. For many years disabled people and their families have proved, again and again, that when they control their own funding – employ staff, pay services, invest in their own lives and in their own communities – they make better decisions than the professionals who currently control the health and social care system. Yet, how slow has been the progress towards giving people meaningful control.

Even when people seem to get control (through a direct payment or personal budget) they find the system won’t let go. Today the personal budget system, which promised so much, has become bogged down in regulations, restrictions, and nonsensical planning and assessment processes. There was a time when we thought that we had seen off all this nonsense, but it has all come back, with a vengeance.

When the system does spend money ‘on disabled people’ it spends it on segregation: special schools, residential colleges, residential care, day centres, respite services, special hospitals, special placements. This is where the real money is found. An analysis of funding in one local authority for people with learning difficulties found that 92% of funding was spent on segregation.

So far, so depressing. But there are some signs of hope – not inevitable progress – but hope. But, if we are to take advantage of these new opportunities for positive change, then the strategies we pursue must evolve.  I will explore this in Part 2.

About the author

Simon Duffy (@simonjduffy) is Director of The Centre for Welfare Reform Chair of the Housing & Support Alliance  and policy advisor to the Campaign for a Fair Society.  His passion is to see people with learning difficulties recognised and respected as full citizens. He is author of several books including Keys to Citizenship and most recently The Unmaking of Man

Enter the Dragon

By Graham Findlay

As the singer Cerys Matthews memorably put it, “Every day when I wake up I thank the Lord I’m Welsh”. Well, I’m not Welsh (having moved from London to Cardiff over 30 years ago to study – I haven’t looked back) but I can empathise with the sentiment. And disabled people have particular cause to celebrate their Welshness, as I’ll explain shortly.

Since devolution in 1999, Wales has shaped its own political path, with whole tranches of public services under our national control (for good and sometimes ill) through the elected Welsh Government and civil service. And in contrast to England, principles of equality are embedded in the political institution – until recently via an Equality of Opportunity committee and still via a Minister with an Equality brief. The Social Model of Disability has also been formally adopted and endorsed as a principle, as we often politely remind the Welsh Government when needed.

This broad political context has been a fruitful springboard for the aims of the disability movement in Wales. Disability Wales/Anabledd Cymru, (DW) where I worked for 10 years, is the umbrella body for disability organisations – similar in some ways to DRUK in England. DW has its mandate from its members, and has been working closely with Ministers since 1999 to shape the Independent Living agenda. For example, an early win was our work with the Housing minister which contributed directly to Wales being the first nation to adopt Lifetime Homes standards in all social housing in Wales – a big achievement for a small country, and the result of many hours of meetings, task groups and consultations.

It’s been a long haul, but a massive gain was made this September when the Welsh Government (WG) announced First Ministerial (read Prime Ministerial) endorsement of their Framework for Action on Independent Living. In essence, this document is a potentially hugely powerful lever for positive change that could transform the lives of disabled people in Wales. It is a manifest commitment by WG:

“The Welsh Government’s vision is of an inclusive and enabling society, which recognises the rights of disabled people to self-determine their lives”

and, beyond the vision and soft words, nine specific areas are listed that will be targeted for improvement:

  1. Access to good quality and accessible information and advice.
  2. Improved access to independent advocacy services.
  3. Improved access to adapted and accessible housing.
  4. Disabled people having more control over their lives by being able to make choices in the care and support they receive.
  5. Improving access to technology that supports independent living.
  6. Improving access to public transport.
  7. Improved access to buildings, streets and public places.
  8. Increased employment rates for disabled people.
  9. An increase in the number of disabled people having access to a Centre for Independent Living in Wales.

These key elements were based upon the stirling work of DW, who over several years of conversations with members, stakeholders and Assembly Members  developed a thorough and nuanced manifesto for Independent Living that was put to the Government, and eventually realised in the Framework. For a policy wonk like me, it’s a shining example of  how influencing can really work, especially through developing strong and trusted relationships with important decision-makers and politicians – the people you need to have on board to make things happen on the ground.

Some may say this is all words and paper and won’t achieve much. I’m not so cynical . Already I’ve cited the Framework in WG consultation meetings around a formal review of housing design standards – and people (especially civil servants) are taking note and listening.

As always, it’s up to us as disabled people to use the Framework as a carrot and sometimes a stick to achieve change. One thing is for sure – without a solid and unified voice on Independent Living from disabled people who live the experience, not much will happen and it may be the wrong thing if it does. For disabled people in Wales, this is a historic opportunity that won’t come along again. We need to grasp it – we really can become authors of our lives.

About the author:

Graham Findlay is currently working at the Chartered Institute of Housing as Positive Action for Disability manager.  He worked at Disability Wales as policy officer for inclusive environments and transport between 1999 and 2009. This blog is written in a personal capacity.

3 years

By Mark Neary

Three years ago this week I was shown the welfare deputyship application that the council had submitted to the Court of Protection. At the time, they had held my son Steven for a year in a positive behaviour unit and its plan was that he should not return home but be moved to a hospital in Wales, over 100 miles away, under section. Steven has autism. Thankfully, three weeks later the judge lifted the deprivation of liberty authorisation that the council had used to keep him in the unit and ordered that he return home straightaway. Six months later, at the judicial enquiry, the judge commentated that if the council had got their way, “Steven would have faced a life in public care that he does not want and does not need”.

Four weeks ago, Steven was allocated his first home of his own – a lovely two bedroom house in the perfect location for him – near to his extended family and close to all the places he goes to during the week. I am classified as his live in carer but when the time comes when I am no longer around or unable to care for him, Steven will have the security of his own home.

He has come a long way in those three years. But every day, as he gets on with his life, there are constant reminders of what might have been. In their court application, the council proposed that his contact with me and his family and friends would be “by remote access, such as a webcam facility”. I still shudder when I imagine how Steven might have coped if the relationships that give him the most meaning were reduced to a pre-arranged internet meeting. This post is a celebration of the life he has fashioned for himself and the constant ache that it may have all been taken from him through the actions of a risk adverse local authority.

On Mondays Steven goes to the local Arts centre where I have my counselling practice. He uses the music room and has a sing song and plays piano and guitar with his support worker. On the first day he made friends with Raj, who teaches Art in the next room. Every week, they have lovely conversations about music and Steven’s interests and Steven now looks upon Raj as a good friend. Raj asked Steven if he wanted a painting for Christmas and Steven immediately replied that he would like a painting of Whistler’s Mother – this is a nod to Steven’s hero Mr Bean’s trip to America. And so it happened that on Christmas Day, we’ll be eating our lunch, with that “hideous old bat” watching over us. Steven would never have met Raj if he’d been sent to Wales.

On Tuesdays, Steven goes to a swimming pool and has made two good friends there; Tyler and Dee. They chat about Take That and Countdown and the guys cheer Steven on as he does his lengths of the pool. One of the support workers told the guys about the plans of 2010 and they were horrified. Dee doesn’t have a webcam, so that relationship would have been lost if he’d been sent to Wales.

This afternoon, Steven was crying with laughter as he and his support worker shared their familiar joke that Cliff Richard is really called Chip Richard and sings “Smelly Toes and Wine”. The set up to that important moment could never happen online.

I could go on. Valuable relationships would have been lost forever. Steven can’t converse to order, so the “webcam facility” would have been a terrible strain. And his relationship with me, that is so important to both of us, would have been fatally damaged. I shiver about that when we sit in his new living room discussing why Basil Faulty hid a kipper in his cardigan.

Christmas brings these feelings to the fore. Not just because of the anniversary but I remember a conversation with the solicitor prior to the court case when he asked me to consider the worst case scenario. That would have meant pitching up at a B&B on Christmas Eve and turning up at the hospital on Christmas Day and opening presents on a cold ward. Perhaps a few Skype messages from his Uncle and friends. This year, Steven is planning a Mr Bean. Abba and Pringles day and thankfully, he is allowed those choices because he has his independence.

But securing that choice took a year and a High Court battle. Surely, it doesn’t have to be like that.

About the author

In June 2011, Mark appeared as a litigant in person at the High Court in the landmark case, Hillingdon vs Neary. The judge ruled that the local authority had illegally held Mark’s autistic son, Steven, for a year in a care home, infringing his article 5 & article 8 human rights. Mark was praised by the judge for his courage and dignity. Mark regularly speaks at social care and legal events on the Mental Capacity Act and Deprivation of Liberty Safeguards. Mark has had two books published: “Get Steven Home” (2011) and “There’s Always Something or Other with Mr Neary” (2013). He is currently working on his third book – “Carespeak”, which examines the language of the social care world.