Supported living, or ‘hidden institutions’?

by Neil Crowther

As Lucy Series explains here, the fundamental principle of ‘supported living’ (like its close relative ‘independent living’) was that people should have the right to choose where and with whom to live on an equal basis with others, with the support they need to do so. Crucially, to make this right a reality, access to the care and support a person needs must not be contingent upon accepting particular living arrangements. This separation was regarded as crucial to the process of deinstitutionalisation – not simply the closing down of long-stay hospitals, but the avoidance of the replication of their features in other forms apparently set in ‘the community’.

As the UN Committee on the Rights of Persons with Disabilities notes in its ‘general comment’ on Article 19 of the UN Convention on the Rights of Persons with Disabilities (living independently and being included in the community):

‘Both independent living and being included in the community refer to life settings outside residential institutions of all kinds. It is not “just” about living in a particular building or setting; it is, first and foremost, about not losing personal choice and autonomy as a result of the imposition of certain life and living arrangements. Neither large-scale institutions with more than a hundred residents nor smaller group homes with five to eight individuals, nor even individual homes can be called independent living arrangements if they have other defining elements of institutions or institutionalization. Although institutionalized settings can differ in size, name and set-up, there are certain defining elements, such as obligatory sharing of assistants with others and no or limited influence over whom one has to accept assistance from; isolation and segregation from independent life within the community; lack of control over day-to-day decisions; lack of choice over whom to live with; rigidity of routine irrespective of personal will and preferences; identical activities in the same place for a group of persons under a certain authority; a paternalistic approach in service provision; supervision of living arrangements; and usually also a disproportion in the number of persons with disabilities living in the same environment. Institutional settings may offer persons with disabilities a certain degree of choice and control; however, these choices are limited to specific areas of life and do not change the segregating character of institutions. Policies of deinstitutionalization therefore require implementation of structural reforms which go beyond the closure of institutional settings.’

The Committee goes on to note how:

‘Providers of support service often wrongly describe their service using the terms “independent” or “community living” as well as “personal assistance”, though in practice such services do not fulfil the requirements posed by article 19. Mandatory “package solutions” which, among other things, link the availability of one particular service to another, expect two or more persons to live together or can only be provided within special living arrangements are not in line with article 19.’

In England, there is evidence – both in official social care statistics and via grassroots reportage – of a growth in the provision of and numbers living in so-called ‘supported accommodation’ which, while maintaining a separation between landlord and care provider and according people who live in them their own self-contained property and tenancy, nevertheless make access to care and support contingent upon ‘congregate’ living arrangements. That is to say, disabled people requiring support are co-located in the same development and the development does not offer accommodation to people who do not require support. Such developments also appear, from reports (though yet to be corrobrated by qualitative research), to be growing in size.

This planned development in Oldham exemplifies the type of development people believe to be emerging across the country: described as ‘supported independent living accommodation with access to some form of shared communal facilities’ it would involve the development of a new-build supported housing scheme for up to 20 adults with learning disabilities.   The council argues that this is in response to ‘a joint strategic needs assessment (that) identified that individuals with learning disabilities and complex needs and their families felt that they have a lack of housing choices available to them in the borough.’

In terms of official statistics, Between 2014-15 and 2017-18 there was a growth of around 5% in the number of working-age adults with learning disabilities receiving long-term support from social services. The proportion who were living in registered residential care homes and in nursing homes declined from 18% to 16%, while the proportion living in ‘supported accommodation/supported lodgings/supported group home’ rose from 18.5% to 22% (3.5%) during the same period.   There was very little growth in the numbers living in their own home with a tenancy (hovering around 10%) or who own their own homes (around 2%). The number living in ‘mainstream accommodation’ with family or sharing with others stayed at around 36% and remains the most common living arrangement for adults with learning disabilities in receipt of long-term support. Hence, supported accommodation would appear to be becoming the default living arrangement for those in receipt of long term support who do not live with family or in residential care homes.

Is this trend consistent with the UK’s obligation to ensure that disabled people enjoy the right to live independently and to be included in the community? A somewhat libertarian argument can be made that no one is obliged to live in such ‘supported living accommodation’.  However, Article 19 (b) of the UNCRPD requires the government to take steps to ensure that:

‘persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’

In its general comment the Committee notes how:

‘Often, persons with disabilities cannot exercise choice because there is a lack of options to choose from. This is the case, for instance, where informal support by the family is the only option, where support is unavailable outside of institutions, where housing is inaccessible or support is not provided in the community, and where support is provided only within specified forms of residence such as group homes or institutions.”‘

It is ‘supported living accommodation’ that appears to account for much of the decline in people with learning disabilities living in residential care homes and the growth in the numbers receiving long term support. Moreover, if other councils follow Oldham’s logic, then ‘a lack of housing choices’ is being addressed via the development of new, large, congregate living arrangements. This comes on top of previous action whereby residential homes have been de-registered and refashioned as ‘supported living schemes.’   Such schemes can only be said to represent choice if other options are being generated.  There is very little evidence that this is the case

As Lucy Series has pointed out, the Care Act 2014 has unhelpfully muddied the waters where ‘supported living’ is concerned. The ‘choice of accommodation’ regulations define ‘supported living accommodation’ as:

(a)accommodation in premises which are specifically designed or adapted for occupation by adults with needs for care and support to enable them to live as independently as possible; and

(b)accommodation which is provided—

(i)in premises which are intended for occupation by adults with needs for care and support (whether or not the premises are specifically designed or adapted for that purpose), and

(ii)in circumstances in which personal care is available if required.

(2) The accommodation referred to in paragraph (1)(a) does not include adapted premises where the adult had occupied those premises as their home before the adaptations were made.

That is to say, for reasons unclear, the Act explicitly precludes a persons own home, or accommodation not designed or designated for providing care and support from the definition of ‘supported living accommodation’ (and hence from the specific right to choose).

Moreover, the regulations also say that

‘(3) For the purposes of paragraph (1)(b)(ii) personal care may be provided by a person other than the person who provides the accommodation.’

By saying ‘personal care may be provided by a person other than the person who provides the accommodation’ it appears to weaken existing case law that the care must be provided by a person other than the person who provides the accommodation, for this is the precise point of ‘supported living’. As Lucy says in her blogpost, in theory a person can strive to direct their personal budget towards being supported in accommodation of their choosing, but why would these regulations not re-enforce the right to choose where to live and the principles which underpin the idea of ‘supported living’ and Article 19 of the UNCRPD that access to care should not be contingent on accepting particular living arrangements? As Lucy has since suggested, these regulations might be a useful focus for the Equality and Human Rights Commission’s work on how far domestic law does or does not implement Article 19.

In conclusion, while the trend may be away from registered residential homes, it appears to be towards one in which people with learning disabilities that receive long term support either live in adulthood with their parents or will continue to live in demarcated, segregated settings where access to care and support is contingent on accepting a particular living arrangement and where there is (to varying degrees): ‘obligatory sharing of assistants with others and no or limited influence over whom one has to accept assistance from; isolation and segregation from independent life within the community; lack of control over day-to-day decisions; lack of choice over whom to live with; rigidity of routine irrespective of personal will and preferences; identical activities in the same place for a group of persons under a certain authority; a paternalistic approach in service provision; supervision of living arrangements; and usually also a disproportion in the number of persons with disabilities living in the same environment.’ On top of this trend is the huge and growing unmet need for support, with ever larger numbers living without any targeted financial or practical assistance (about whose lives we know very little).

For understandable reasons, much of the debate about the situation of adults with learning disabilities has for the past 10 years focused on incarceration and ill treatment in Assessment and Treatment Units. There are issues that are highly specific to ATUs, but at the same time ATU’s are arguably just an extreme manifestation or symptom of a much wider fact: that institutionalisation never left the lives of people with learning disabilities and that rather than continuing the long march to freedom, for those still eligible for care and support, we are instead – like many other countries in Europe and around the world – re-imagining it for the future.

 

INDEPENDENT LIVING: A POSITION STATEMENT FROM THE INDEPENDENT LIVING STRATEGY GROUP

The Independent Living Strategy Group is a network of disabled people’s organisations and their allies. The group is chaired by Baroness Jane Campbell and includes disabled people who were part of the independent living movement from the 1970s, as well as younger activists, other individuals and organisations concerned with the future of independent living.

“Independent living is what non-disabled people take for granted”

Independent living means disabled people living in the community with the same choices, control and freedom as any other citizen, with the removal of barriers to equality of opportunity, and where any practical assistance is based on our own choices and aspirations. The same principles extend to people managing long term health conditions, and include people of all ages.

Over the last thirty years or so, we have seen major improvements in disabled people’s life chances. Our society now expects disabled people to be treated with respect, to have opportunities, to live in their own homes with their own families, and make their own contributions to their local communities and to society generally.

Much of this progress has been brought about by the efforts of disabled people themselves and their organisations. We persuaded both central and local government that the resources that society makes available should be spent in ways which enable us to achieve our goals, to participate and to contribute just as much as any other citizen. Our case for a more integrated and joined up response to our needs, with the emphasis on supporting self-determination, has been largely accepted although not yet fully realised.

These victories were a reflection of support for the kind of society which includes everyone and a recognition that we all benefit from living in inclusive, accessible and welcoming communities. There is widespread support for public services which meet people’s aspirations and the needs of modern society.

Our aspirations for independent living are, therefore, a shared enterprise between disabled people, government and the wider society – and they will only be achieved if policies and their implementation are carried out in partnership with us.

Independent living is not just about social care. Neither is it about living on your own or doing things for yourself. Instead it means having choice and control over whatever assistance we need to go about our daily lives. It means, as the UN Convention on the Rights of People with Disabilities says, having the equal right to live in the community, with choices equal to others.

Our aspirations rely on an integrated support framework and the removal of barriers in all aspects of our lives. We all want a society which invests in the things that connect people to one another and to communities, the things that make us all feel part of society and not ‘apart from’ society.

It is this vision of independent living which we believe must underpin the political and public debates about the future of social care. We look to both central and local government to promote, protect and fulfil the rights of disabled people to live independently in the community and to secure their full inclusion, contribution and participation in all aspects of social and economic life.

We urge public and politicians alike to move beyond the current debate about the cost of residential care for older people. People of all ages, who need assistance to go about their daily lives, want to be connected to their communities and to have choices equal to others. The best practice that currently goes under the heading of ‘social care’ is about enabling the lives we choose to live. When this is achieved it is the most important thing that our society can do for its citizens. Our public and political debate should therefore be about how do we achieve this because, if we do, all our lives will be improved.

As a Group, and also as individuals and organisations making up the Independent Living Strategy Group, we will:

• work with the Equality and Human Rights Commission to develop an enforceable right to independent living
• campaign to build public understanding of and support for independent living and to raise it up the political agenda
• work to influence the full range of policy developments relevant to independent living
• Identify and share the best and the most promising practice in supporting independent living
• make the case for resourcing a national network of disabled people-led organisations to promote and support the right of disabled people to live independently and to secure their full inclusion and participation in all aspects of social and economic life
• support the case for extending the NHS’s ‘need, not ability to pay’ principle to social care and for fully funding the service as part of ‘new social contract’ between the citizen and the state (as recommended by the 2018 Darzi review of health and social care).

Is it time for timidity or for ambition on support for younger disabled people?

It’s 13 years since the UK government adopted the promotion of independent living as official policy and committed to developing an system of integrated individual budgets, underpinned by support for a national network of disabled people’s user led organisations (DPULOs).  The Prime Minister’s Strategy Unit report ‘Improving the Life Chances of Disabled People said:

‘While Direct Payments have delivered significant choice and control for some people, they are not suitable for everyone. Moreover, the fragmentation of people’s needs across different budgets means that Direct Payments are not always sufficient to deliver a personalised and holistic response to individuals’ needs.

This report therefore proposes that different sources of funding should be brought together in the form of individual budgets – while giving individuals the choice whether to take these budgets as cash or as services.’

The intervening years have been punctuated by developments such as the Right to Control, Personal Health Budgets, Putting People First, the Care Act 2014, personal budgets the context of disabled children and families and nods to personal budgets in relation to employment support. Nevertheless, the lack of a shared ethical and legal underpinning, or of policy coordination and integration across these schemes means that they are failing to deliver the promise of individual budgets to secure wraparound support for living a life, as articulated by the Life Chances report. In maintaining the fragmentation of traditional services, they have also failed to disrupt value chains or unpick deeply embedded professional and institutional cultures of control. The choice and control architecture envisaged by the Life Chances report (DPULOs) has not enjoyed the government support that the report advocated, meaning that inequalities in the capacities and resources of different people to navigate the market to secure their needs are often unaddressed and unsupported. Implementation of all of these schemes has struggled against the floodwaters of austerity, coming on top of long-term underinvestment in relation to adult social care in particular. Austerity has not only led to a reduction in the quantum of support available, but in the willingness of public authorities to let go of control. More recently, a resurgent Left has begun noisily to frame personalisation as an arm of neoliberalism, designed only to shrink the State by a thousand cuts. The Labour Party’s official position is uncertain: not vocally opposed, but no longer an enthusiastic advocate. With a clear agenda of ‘bringing public services back into public ownership’ it is unclear what its approach to giving disabled people choice and control would be.

Political realities may therefore mean that the disjointed and incremental journey of personal budgets is all we can hope for, and that one day there may be a confluence sufficient to bring us closer to the idea originally mooted in the Life Chances report. We might get there eventually. But we also might not….

Meanwhile, Australia has developed a national scheme of integrated support for working age disabled people, co-funded by national and regional government with the explicit aim of realising Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities and the other human rights treaties to which Australia is Party, under the banner “Every Australian Counts.” The scheme involves a significant uplift in expenditure on supports.

While there are problems with implementation of the National Disability Insurance Scheme of a kind that will be all too familiar to disability rights advocates in the UK, it is nevertheless galling that the country has in effect broadly adopted and run with the approach envisaged by the Life Chances report. But the fact that it has is also an opportunity, as for many years now UK government’s of all colours have looked to both the USA and to Australia for inspiration.

Earlier this year the then Cabinet Secretary Damien Green announced a forthcoming Green Paper on the funding of long-term care for older people, quickly rushing out a statement that a ‘parallel process’ would take place concerning funding for younger people. Many reacted negatively to this separation, suggesting it indicated only that younger people’s care and support was an afterthought. That may or may not be so, but the question now is: how do we turn this into an opportunity?

I believe the answer is to put forward a big bold idea, based on the National Disability Insurance Scheme. Let’s call it the Access to Living Scheme. As envisaged in the Life Chances report and the NDIS Act, the scheme will be explicitly rooted in the UK’s obligations to protect, promote and ensure the rights of disabled people. Rather than ‘social care’ or ‘continuing heath care’ or ‘employment support’ and so on the scheme will provide wraparound support with living a life via a scheme of integrated individual budgets. A national network of peer support platforms will receive seed funding, and can take the form of coops, social enterprises, community businesses and charities. These ‘access to living centres’ will support people to identify and articulate their own aspirations and needs, to manage their budgets, offer opportunities to pool resources and play a key role in fostering the bonding and bridging social capital that can help create more self-sustaining communities. The Access to Living Scheme will enjoy an initial uplift in investment, but this investment will within a decade lead to sustainability as the current costs of administering multiple schemes subside, productivity sharply increases and the economic participation and wellbeing of disabled people and their families shows vast improvements.   The Access to Living Scheme, will, like the NHS, come to be a source of national pride, enjoying broad support across political party lines.

We invented the idea after all. Isn’t it time to got on with it?

Alicia’s Social Care Future Wishlist

Alicia Wood, Dimensions

Martin Routledge challenged me to blog about social care as part of a quest to get a range of views from people in the social care field. Follow them on #socialcarefuture. I have so much to say about what is needed for a good social care so for the sake of brevity, I have condensed a wide range of thoughts down into my #socialcarefuture wish list…

1. Money can’t buy you love.

I’m going to get this one out of the way quickly, we need more money to pay for care and support. Local authorities do not have enough money to pay for the care and support needed in their communities and they need more. Providers are facing a broad onslaught of issues and regulatory changes that mean that care costs more. What we don’t need however is any more money being spent on care and support that doesn’t enhance people’s lives. We need social care that helps give people something to get up for every morning and recognises people as valuable human beings that happen to need a bit more help than most of us, not a drain on our economy.

No doubt that times are tough but I’ve also been through times when there has been a lot of money sloshing around and people were still not getting the care and support they wanted and needed. More money does not automatically equate to better services, we need a BIG rethink on what social care is and does that makes it something that we are all invested in for our own futures.

I want to see a care and support system that enables the people that use it to experience love, friendships and relationships, have meaning in their lives and be valued and contributing members of their communities. I don’t want to keep paying for what doesn’t work.

2. Put our brands and egos away and put our money into enabling disabled people and families to speak truth to power.

 

The social care narrative and debate often feels very paternalistic. That’s because it usually comes from professionals and organisations that represent professionals and organisations. A narrative peppered with beds, crises, the vulnerable, the disabled….blah blah blah. When if you listen to people that need social care, their families and those (often small and not well funded) organisations doing brilliant stuff you will hear the kind of narrative and debate that connects with people, and not just people involved in social care.

Please, please, please can those people and organisations that have power, money and the ear of those in power get behind these more authentic voices so that they can be heard and we have a chance of changing this sorry situation.

3. Communicate better about what social care is – no-one cares about ‘social care’.

I rarely use the term social care in my work or home life. It somehow feels so broad it is a bit meaningless to me. It is used to describe such a wide area of care, support and funding; social work, personal budgets, direct payments, community services, personal assistants, home care residential care, supported living…the list goes on.

If you ask the average person what social care is, most people don’t really know how broad it is and what it does. As an (unscientific) experiment, I just asked the person sitting next to me on the train what they thought social care was. Answer: social workers for children and carers that come to old people’s houses to look after them.

Yet we have conversations about ‘social care’ as if it is one thing. We talk about the needs of a wide group of people under one banner when the reality is that the needs of children and families is vastly different from disabled adults which are also very different from those of older people.

If we want to understand what we are really taking about ourselves, let alone the media, general public and politicians, we really need to start understanding and communicating much better about what social care really is.

It also doesn’t help that we have adopted industry jargon that is meaningless even to most people that use social care. It’s no wonder that most people don’t care about social care.

4. Personal budgets are not an evil way of privatising public services, nor are they the magic solution to making social care better.

 

Personal budgets and direct payments really work for some people and not for others. There I said it. I was one of the people that was evangelistic about them and I genuinely believed that they were THE solution for social care and continuing healthcare. I still think that they are great but I think that they are a small part of reforms that are needed. I want to see more focus on reforming commissioning so that people have a real say in local services and it is transparent, regulated and accountable. It is scandalous that so much crap is still being commissioned and we need local mechanisms to stop this, of which a part of is personal budgets.

If we stop commissioning the crap we may end up with a regulator that can regulate more effectively instead of constantly fire fighting.

5. Stop investing everything in ‘the next big thing/programme/pilot/vanguard and work on the basics to getting care and support right.

Don’t know about you but I can barely make myself read about THE NEXT BIG THING. It’s usually good stuff so don’t take this as a criticism friends and colleagues, but it is exhausting to see another reorganisation, integration, programme, initiative, set of standards etc. when there are so many basic things that need tending to.

Like how to make sure that disabled and older people are getting the support they need to live the lives they want and;

How to make sure that we pay those in care and support roles a wage they deserve for one of the most important jobs in our society and;

How we make sure that no one is getting substandard or dangerous care and support.

If there is going to be A NEXT BIG THING could it be that we stop tinkering with systems (that are flawed and will always be flawed) and just form relationships, talk to each other locally, have good conversations, listen to what the people who use social care and their families want and do what you can. If you can’t do what people want, tell them and ask for their help to find solutions as they will usually have some answers.

Lastly 6. People who need care and support also have a lot to give.

We need to stop framing people who use social care as simply vulnerable and needy as not only are we feeding perceptions that a whole group of people are a drain on our society but it simply isn’t true. Whether you are 105 years old and living in a care home or have profound learning disabilities and don’t use words to communicate, everyone has something to give. Who wasn’t inspired by the care homes that are working with nurseries? Or the examples of people with learning disabilities that help their older neighbours by picking up groceries and walking the dog, or volunteer in their local nursery or school to look after children.

My wish would be for housing, care and support providers to come out of their silos and shift their focus towards becoming community builders, community connectors and rights activists alongside the people they house or support to deal with some of our social problems such as rising mental ill health and loneliness. To enable the people they support to help their communities, get jobs, give and receive education and demonstrate that the value of human beings is much more than just economic productivity. We need older and disabled people to be central to our communities so that all our children grow up with people that are too often hidden from them, and our communities don’t miss out on what disabled and older people bring.

Alicia Wood is Head of Public Affairs for Dimensions and co-founder of Learning Disability England

@AliciaWood___

#socialcarefuture has been developed to create a space, including a gathering in November, for a wide range of people and voices to debate and take action for a positive future.

We want to get past just thinking about stabilising the current system which isn’t fit for the future. We want to make a contribution to a much more positive vision, share what’s going on now that helps get us there, and find ways of supporting each other as we build the future.

 

Don’t panic! Why the social care crisis will not be solved by making a crisis out of social care

By Neil Crowther 

 

‘Understanding means finding a story you already know and saying, ‘Oh yeah, that one.’ Once we have found (the) story, we stop processing.”

Roger Schank, Tell Me A Story, 1998

One of mankind’s most incredible recent success stories – vastly increased life expectancy – is now most often described using metaphors of impending catastrophe such as ‘silver Tsunami’ and ‘demographic timebomb.’   More recently, a polarising discourse which pitches old against young has taken hold and begun to shape debate. As a result, our ageing society is increasingly framed as a problem and a threat, rather than as a success and an opportunity. Like debates around immigration, discourse around ageing casts it as creating ‘pressure’ on public services, the economy and communities. In short, it is overwhelmingly positioned in public discourse as a growing crisis.

Debates about the future of health and social care are contributing to and being shaped by this narrative. ‘Integration’ of health and social care is positioned as a solution to the crisis in the NHS, with older people ‘bed-blocking’. At the same time, debates concerning funding of care in later life have centered on individuals drawing on the equity in their homes, ideas that are quickly dismissed as ‘taxes’ upon death or dementia.   Younger people who require care and support feature barely at all in this debate, a fact that appears to be behind the governments’ decision to address its incoming Green Paper exclusively to older people.   The following paragraph from a piece by Rachel Sylvester in the Times Newspaper on 16 January 2018 exemplifies these themes:

‘The NHS crisis is really a social care crisis, created by an ageing population and exacerbated by government cuts. Although health budgets have been ringfenced since 2010, there has been a £6 Billion cut in spending on social care and an entirely related 50% rise in the number of older people stuck on hospital because there is nowhere for them to go in the community’

The debate around the future of health and social care is hence dominated by the language of death, bed-blocking, tax, unfairness between young and old, losing our homes, unaffordability and crisis, which together is likely to encourage fatalistic thinking about the future. It is little wonder then that government’s since the mid 1990s have struggled to command public engagement and support for a long term funding settlement.   The December 2017 Ipsos-MORI ‘Issues index’, which maps public priorities, found only 2% of the public listed ‘ageing population/social care for the elderly’ as the most important issue facing the country today, and only 12% highlighting as an ‘other important issue’.   The challenge is both that the issue lacks public salience (or the public are reluctant to express it) and insofar as it enjoys public salience, the salience it does enjoy is deeply unhelpful.

Have those advocates striving to seek a new settlement for social care challenged or helped reinforce these narratives? The Frameworks Institute, a US-based organisation increasingly working with social partners in the UK, lists the features of poor communications practice as follows:

• Employing crisis communications and highlighting problems, rather than solutions, encouraging fatalistic thinking
• Leading with unframed facts and evidence, and professional jargon, rather than values and frames which appeal to people’s feelings and aid understanding, or employing unproductive or unhelpful values and frames.
• Telling individual stories without explaining the systemic factors lying behind them, which encourages people to see the problem as residing with the individual
• Engaging in myth-busting, which often reinforces, rather than challenges the myths by repeating them

Conversely, effective communications:

• Combines urgency with efficacy – people must feel a problem can be solved.  Set out the solution and avoid crisis language
• Leads with values and employs ‘metaphors’ or ‘simplifying models’ that engage with productive feelings about an issue and that create ‘pictures in our minds’ to aid understanding
• Uses thematic stories, not individual stories to foreground the systemic factors shaping outcomes
• Connects outcomes to society as a whole – explain how the positive or negative outcomes related to social care affect everyone
• Contextualises numbers – don’t expect them to speak for themselves
• Avoids myth busting – it tends to affirm the myths, not overcome them.

A quick look at recent communications around social care by a selection of public-facing organisations in the field suggests that they are contributing to the problematic way social care is framed. Almost all of the large NGOs in the field, spanning older people, disabled people are carers are leading on ‘social care crisis’ in their communications. None posit solutions other than ‘more funding.’ Most use unframed statistics about the situation facing their client group to convey a sense of urgency.

Research by IPPR and Price Waterhouse Coopers for the Labour government in 2009 found ‘Low awareness and uncertainty: confusion about the nature of social care services.’ Yet insofar as organisations attempt to describe what social care is in their headline communications, little attempt is made to convey any ambition beyond basic ‘life and limb’ services. Even within those limited ambitions communications fail to convey the value to individuals, families and wider society of social care, nor to they employ any ‘metaphors’ or ‘simplifying models’ to aid understanding.

The story of social care needs to be told within broader human narratives around relationships, family and community, in the way TV shows like 24 hours in A&E, One Born Every Minute or Educating Essex have done so for the NHS and education for example. We need to learn from the way other policy issues have been framed. For example, the benefit of ‘flexible working’ is not found within the workplace, but in having time to spend outside the workplace with and on family life. Hence the most effective ‘frame’ through which to communicate the benefits of flexible working is the family, not the workplace. Where does social care have meaning and value to people? We also need to overcome the ‘othering’ that can infect perceptions of social welfare, particularly ‘needs- based’ social welfare that is targeted on particular groups, as social care is. Again, this suggests that more effective communications might foreground stories of family life and use the voices of wider family members, such as grandchildren, to convey the universal importance and value of social care.   There are also major lessons from the reframing of ‘gay marriage’ to ‘equal marriage’ which consciously shifted from invoking the ‘civil rights’ of a minority to emphasising the universal desire for love, relationships, family and stability and so on (i.e. the things people commonly value about getting married, which for the most part isn’t their civil rights).   What is it that people commonly value and which social care helps to protect or extend? How far are these values embedded in our communications and the frames we employ when talking about social care?

The fact that social care enjoys low public awareness and understanding is, perversely, a major opportunity to define and articulate a new story of change, especially as evidence also suggests there is at the same time a strong desire for more information and debate about its future.

We require a new narrative, employing values and frames to enlist support for and building understanding of the crucial role that social care can play in creating a better society for all.

Communicating effectively is an empirical question, requiring research, development, testing and refinement. There are a number of initiatives underway in the UK presently to strive to reframe debates, such as work to reframe poverty, work on immigration, criminal justice, children in care, child protection, climate change and human rights.   There is no equivalent work on social care.

It involves work to clarify the communications goals and current practices of communicators in the field and the values and frames embedded in these, to map current discourse and public attitudes and the values and frames embedded in them and to explore the impact of the above on what people think, feel and are prepared to do about an issue such as social care. It then involves work to identify values and frames that might affect more productive attitudes and understanding and hence enlist stronger support for our goals and to begin to construct narratives and messages in which these are embedded. Finally it involves the dissemination of these new values-based frames, including via guidance, training spokespeople, coordinated communications activity and proactive campaigns.

The process can be a challenging one for those in the field, confronting their own practices and beliefs. It needs, by design, to be iterative and to bring people on a journey, otherwise it is likely to be rejected.   It requires expert support and funding.

Who’s on board?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Does it pay to design one social care system from cradle to grave?

The government announced yesterday that a (nother – groan) Green Paper on social care will be published by Spring 2018.  However, it says quite clearly that the Green Paper will set out ‘its proposals to reform care and support for older people.’  It goes on to explain the chief rationale for the Green Paper Reform as being that ‘the realities of an ageing society mean that we must reach a sustainable settlement for the long-term.’  However, the announcement also says:

Whilst the Green Paper will focus on care for older people, the Government recognises both the challenges faced by people of working age with care needs and the many common questions about the sustainability of the care system…..to ensure that issues for working-age adults with care needs are considered in their own right, the Government will take forward a parallel programme of work, led jointly by the Department of Health and the Department for Communities and Local Government…’

My Twitter feed suggests many providers and disability organisations are viewing this extremely negatively.  The looming crisis in funding connected to pay for overnight care may be behind this – it appears the government is allowing political imperatives to dictate its focus and to relegate younger disabled people in order of priority.

BUT…. (and its a big but because I am hedging), the debate on the long-term funding of social care has not served the interests of younger disabled people at all well for as long as I can remember.  The principal driver is the ageing population and in particular the growth in the population of over 85s.  The chief policy questions have been either how to avoid older people prematurely requiring the NHS or ‘bed-blocking’ in hospitals when they can’t go home, pushing policy inexorably towards transforming social care into ‘healthcare in the community’ under the rubric of integration and on how much of people’s assets they should be required to use up to pay for social care either before or after they die.  These issues have framed the debate about both the form social care should take and how it should be paid for in future.  Yet these are largely irrelevant questions when it comes to younger disabled people.  In fact, the questions surrounding how to ensure a sustainable system of support for younger people have been rarely discussed, it at all in recent years.

So, perhaps a cautious welcome would be wise, on the proviso that these will genuinely be parallel processes, and not a case of kicking funding of social care for younger disabled people into the long grass.

The opportunity and challenge right now is arguably not to bemoan this separation but to take advantage of it by striving to frame the debate concerning younger disabled people.  I was struck in particular by this in the government’s announcement:

‘To achieve reform where previous attempts have failed, we must look more broadly than social care services alone, and not focus narrowly on questions of means-testing, important though these are. Our vision for care must also incorporate the wider networks of support and services which help older people to live independently, including the crucial role of housing and the interaction with other public services’

There are many blogposts on this site encouraging the same approach when it comes to younger disabled people.  To really make this new process count, we might wish therefore to say with one voice to government that social care should not be our starting point – independent living should be.   More specifically, to turn the government’s analysis on its head, the question isn’t how to brigade wider supports to the ends of ‘social care’ but rather to think about how what we now call social care can be integrated into a single system of personalised support, spanning personal care, employment, education, health (potentially some benefits) and so on and how social inclusion can be achieved through people’s increased participation in the common domains of associational life (work, education, leisure, politics, religion, family life, online etc).

And of course, we have to get serious on the question of finance.  I fail to see how social insurance, equity release or asset-based funding options offer anything practical or fair for younger people.  Paying via general taxation has to be on the table and I would argue that pushing for this in order to invest in a fully integrated system of support, drawing together existing services and benefits (already paid for by general taxation) would be more successful than trying only to argue for a major uplift in public spending on social care as it is presently understood.

As a starting point, the government likes to tell us that it spends £50 billion of public resources a year for a range of different benefits and services for disabled people.   As my good friend Rich Watts suggests: hand it over, hand it over, hand it over.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A statutory right to independent living?

Neil Crowther, October 2017

This discussion note was prepared for the Independent Living Strategy Group

Purpose

This short note provides background information to inform discussion at the Independent Living Strategy Group meeting on 23 October 2017 concerning the case for pursuing new legislation to protect the right to independent living and the form such legislation might take

Summary

• Disabled people in England do not enjoy a standalone right to independent living. Instead independent living is based on a patchwork of different laws, policies and programmes.
• Recent years have shown just how precarious the ‘right’ to independent living is in England. Spending cuts and reforms have seen people denied or lose vital supports. Some people face having to move into institutional care, while other are trapped in institutional care because community based alternatives are not available. Some people report having less choice and control over support and their lives than in the past.
• Both the UK Joint Parliamentary Committee on Human Rights and the United Nations Committee on the Rights of Persons with Disabilities have said that the government needs to adopt standalone legislation. The UN disability committee says that the government should provide ‘all persons with disabilities with substantive and procedural rights to be living independently within the community.’
• There have been several attempts and recommendations to get a ‘right to independent living’ onto the statute book in England. These include the Independent Living (Disabled Persons) Bill 2006-7, the Independent Living Strategy (2008), the Joint Parliamentary Committee on Human Rights Inquiry into Independent Living (2012), via the Care Act 2014 and the Disabled People (Community Living) Bill 2015.   While each has had some influence on policy and law, none has secured a right to independent living.
• The Equality and Human Rights Commission will shortly be exploring what a right to independent living might look like.
• There are various ways the right to independent living might be better protected and ensured in our law. These include:
• Requiring government and public bodies to have ‘due regard’ to independent living when making policy and taking decisions
• Strengthening individual rights to support and to choice and control over support
• Outlawing spending on the development or commissioning of institutional care
• Requiring national and local government and public bodies including in the NHS to develop and implement independent living strategies
• International examples of the above approaches are provided in this paper

Independent living as a human right

In its recent General Comment on the right to live independently and to be included in the community, the UN Committee on the Rights of Persons with Disabilities advises that it in order to implement the Convention States Parties should:

‘Provide all persons with disabilities with substantive and procedural rights to be living independently within the community;’

UK activists and independent living pioneers had long framed independent living as a ‘right’, albeit initially influenced overwhelmingly by the ‘civil rights’ approach of their counterparts in the USA, rather than – until relatively recently – drawing on the international human rights framework.   The right to independent living is not however given effect in any one piece of law. Rather, over time, the various ‘pillars’ which underpin it –equality and non-discrimination, accessibility, choice and control over services, personal assistance, employment support, support in education, support with disability related costs and so on – have been given effect, to varying degrees of success, across a wide range of policy, legislation, programmes and in changes to practice and culture.    This is important and valuable, as too often independent living has and continues to be reduced to a question of closing down archetypal institutions – a challenge narrowly confined to the field of social care – when the bigger challenge is that of opening up the community and enabling people’s full participation and contribution within it. However, as the Joint Parliamentary Committee on Human Rights noted in 2012:

‘…while the UK has made progress in developing a rights-based approach to the design and delivery of public service support to disabled people, disabled people in the UK do not enjoy a right to independent living in domestic law….

… While we consider the existing matrix of human rights, equality and community care law to be instrumental in the protection and promotion of the right to independent living, we do not consider it sufficient.’

Despite considerable progress over the past 40 years, the last decade of austerity measures have demonstrated just how precarious the ‘right’ to independent living is in the UK – and England specifically. This is not just in terms of the overall quantum of financial and practical support available, but equally in terms of the control disabled people are able to exercise over their support and day-to-day lives. For some, that loss of control gets to the very core of the right to independent living – the right to choose where and with whom to live on an equal basis with others.   For many others, it is has resulted in increased poverty, loss of opportunities and marginalisation. The Chair of the UN Committee on the Rights of Persons with Disabilities was moved to describe what has happened in the UK as a ‘human catastrophe.’

These setbacks or barriers to progress are fundamentally consequences of economic stewardship, political strategy and public opinion.   We will not in future make progress on independent living without fundamental shifts in the economic climate, political economy and in public attitudes and understanding. However, the absence of a legislative underpinning of the right to independent living has arguably left disabled people extremely exposed, with the assault on people’s human rights often framed simply as ‘savings’ that have been necessary to ensure that we ‘live within our means.’ In some instances those ‘savings’ will place disabled people in institutions and there is nothing presently in law to prevent it.   In others, people’s support packages have been cut such they risk becoming isolated and segregated from the wider community, including – as in the case of Luke Davey – under the pretense of promoting ‘independence.’

It is important, however, not to regard lack of respect for disabled people’s right to independent living solely as a consequence of austerity. While the State – national and local – may no longer build or operate archetypical institutions (outside the area of acute psychiatric care) institutional care continues to be developed by private businesses, for profit, with the support of local authority and NHS Commissioners, with places paid for by the State at often exorbitant cost.   The recent General Comment on the right to live independently and to be included in the community by the UN Committee on the Rights of Persons with Disabilities states that:

‘States parties should ensure that public or private funds are not spent on maintaining, renovating, establishing, building existing and new institutions in any form of institutionalization. Furthermore, States parties must ensure that private institutions are not established in the guise of “community living”.’

Domestic law appears presently impotent to prevent such developments.

Further, it is clear that the attitude and approach of different public bodies to disabled people’s right to choice and control is not entirely contingent on their financial position. All local councils and Clinical Commissioning Bodies face major challenges in balancing their books, but not all have felt it necessary to do so by reducing the scope of control people have over their support, even of the overall amount of support available has been reduced. Some have seen the extension of choice and control as a way to realise efficiencies, rather than as a cost to be contained.   In other areas, independent living runs up against politics and philosophy that is intrinsically hostile to choice and control, especially in the area of social security and employment support.

Perhaps unsurprisingly then, following its recent examination of the UK’s compliance with the UN Convention on the Rights of Persons with Disabilities, the UN Disability Rights Committee recommended that the UK:

‘Recognise the right to living independently and being included in the community as a subjective right and the enforceability of all its elements and adopt rights-based policies, regulations and guidelines for ensuring implementation’

Their recommendation echoed that of the UK’s Joint Parliamentary Committee on Human Rights which in 2012 recommended that:

‘….all interested parties, governmental and non-governmental, immediately start work on assessing the need for and feasibility of free-standing legislation to give more concrete effect in UK law to the right to independent living.’

 

Attempts to secure legislation on the right to independent living – A brief history

Recent past attempts to win support for an express right to independent living in domestic law have faltered.

• Disabled Persons (Independent Living) Bill (2005-7)

Drafted by the Disability Rights Commission and sponsored by the late Lord Jack Ashley, the Disabled Persons Independent Living Bill was a Private Members Bill which sought to repeal and replace all previous social care legislation, mixing strategic obligations on government and local councils with specific entitlements to support.   Key features included:

 

• Duties on national and local government to develop independent living strategies
• Duties on local councils and NHS bodies to ensure sufficiency of services and supports
• Duties on local councils and NHS bodies to cooperate, including through pooled funding
• Right to information and advice
• Right to self-directed assessment
• Right to an individual budget
• Right to choose where and with who to live

While the government did not support the Bill, a number of its features can clearly be traced in the Care Act 2014

• Independent Living Strategy (2008)

DPO representatives involved in the group that helped draft the last Labour government’s Independent Living Strategy had proposed legislation on the right to independent living. The then government said that it would review the case for legislation in 2013, having evaluated progress against measures to determine whether:

• disabled people who need support to go about their daily lives had greater choice and control over how support is provided.
• disabled people had greater access to housing, transport, health, employment, education and leisure opportunities and to participation in family and community life.

On behalf of the Independent Living Strategy Group, Baroness Jane Campbell and Jenny Morris wrote to the then Minister for Disabled People Esther McVeigh in 2013, attaching a review of progress and asking whether the commitment to review the case for legislation would be honoured. The Minister advised that it would not be conducting any further monitoring of the goals in the strategy or giving consideration to legislation.

Joint Parliamentary Committee on Human Rights inquiry into implementation of the right to independent living (2012)

As noted above, following a detailed inquiry into the UK’s implementation of Article 19 of the UNCRPD the Committee concluded that the patchwork of legislation in existence at the time was insufficient to protect the right to independent living. It recommended that government and others explored the case for a freestanding right to independent living following the UNCRPD Committee’s examination of the UK.   The government responded by citing its plans for what became the Care Act 2014

• Care Act 2014

 

The Law Commission advised government on the content of a proposed Care Bill. It considered whether ‘independent living’ should be included as a statutory principle and concluded:

‘At consultation, a principle based on independent living was often seen as a means of establishing enforceable legal rights to services. In our view, this is not the purpose of statutory principles. Furthermore, this concept is covered adequately by Articles 8 and 19 of the United Nations Convention on the Rights of Persons with Disabilities. We agree that a principle based on an assumption of home-based living would not be suitable to be included as a principle in the statute. The key issue should be the person’s wishes and feelings, and in effect this principle could skew choice in one particular direction.

….We are not persuaded that statutory principles are necessary to promote non- discrimination and human rights. This would simply repeat unnecessarily the provisions of the Equality Act 2010 and the European Convention on Human Rights. There is also a substantial body of case law on the application of anti- discrimination legislation and the European Convention to adult social care. We do not consider that a principle promoting efficiency or equity would be sufficiently precise to be capable of operating as a proposition of law.’

The House of Commons scrutiny Committee on the draft Care Bill agreed with the Law Commission.

The statutory guidance accompanying the Care Act 2014 says that:

1.18 Although not mentioned specifically in the way that wellbeing is defined, the concept of ‘independent living’ is a core part of the wellbeing principle. Section 1 of the Care Act includes matters such as individual’s control of their day-to-day life, suitability of living accommodation, contribution to society – and crucially, requires local authorities to consider each person’s views, wishes, feelings and beliefs.

1.19 The wellbeing principle is intended to cover the key components of independent living, as expressed in the UN Convention on the Rights of People with Disabilities (in particular, Article 19 of the Convention). Supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act. The language used in the Act is intended to be clearer, and focus on the outcomes that truly matter to people, rather than using the relatively abstract term ‘independent living’.

In her analysis of the compliance of the Care Act with the UNCRPD, Tabatha Collingbourne notes:

‘there is no recognition in the Act of a right to live independently and be included in the community; ‘well-being’ remains a principle, not a ‘right’; and the socio-economic elements of Article 19 are not ‘rights’ but ‘welfare’…..provision of the support services essential for the exercise of Article 19 remains vulnerable to retrogression, unmonitored and unenforceable.’

Certainly, the recent case of Davey versus Oxfordshire County Council would seem to confirm these conclusions.

• The Disabled People (Community Inclusion) Bill (LB Bill) 2015

This proposed Private Members Bill was drafted by the Justice for LB campaign and aimed to strengthen the rights of disabled people to choose where and with who to live and the obligations of local authorities and NHS bodies to create community based alternatives to institutional care.

Unfortunately it has so far proved unsuccessful at ballot and therefore not been heard in Parliament. However, both the campaign and its proposals have influenced other developments including the Law Commission’s review of Deprivation of Liberty Safeguards and government policy, including the ‘No voice unheard, no right ignored – coalition government consultation’ in 2015.

• Equality and Human Rights Commission

In the light of the UNCRPD Committee’s concluding observations and its own analysis, the Equality and Human Rights Commission is planning to explore options for a statutory right to independent living.

 

How could legislation help and what form might it take?

 The following examples of existing laws are not intended to be exhaustive, but illustrative of how the law might be enhanced to better respect, protect and ensure the right to independent living.   Some might demand standalone legislation, where others could be achieved through the amendment and augmentation of existing law, such as the Care Act 2014.

• A statutory duty to have ‘due regard’ to the UNCRPD

For example, the ‘Rights of Children and Young Persons (Wales) Measure’ 2011 places a duty on all Welsh Ministers to have due regard to the substantive rights and obligations within the UN Convention on the Rights of the Child and its optional protocols. Section 2 of the Measure requires Ministers to publish a Children’s Rights Scheme which sets out the arrangements Ministers will have in place to have due regard to the UNCRC. Welsh Ministers published their first Children’s Rights Scheme in May 2012 which set out the arrangements for complying with the due regard duty when considering proposed new legislation, proposed new policies and a review of or change to an existing policy and/or legislation.

The duty to have due regard to the UNCRC has been extended further and from May 2014, all Ministers will need to have due regard to the UNCRC when exercising any of their Ministerial functions.

Existing ‘due regard’ duties with relevance to independent living include the Public Sector Equality Duty and the section 1 of the Care Act 2014 (the wellbeing principles).  In addition, the Human Rights Act 1998 demands that Ministers and public bodies must comply with the European Convention on Human Rights.

• Individually enforceable rights to choice and control over where and with who to live and to support

The proposed Disability Integration Act 2017 in the USA is civil rights legislation to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. It states that ‘States, local governments, or insurance providers may not discriminate against such individuals in the provision of community-based services by: (1) imposing prohibited eligibility criteria, cost caps, waiting lists, or payment structures; (2) failing to provide a specific community-based service; or (3) requiring an individual to receive a service in a congregate or disability-specific settings.

The National Disability Insurance Scheme in Australia is specifically framed as a vehicle for giving effect to Australia’s obligations under the UNCRPD. It adopts as national insurance approach to funding support and gives eligible persons the right to an individualised plan, including a ‘statement of participants supports.’   A recent Federal Court case in Australia ruled that the scheme is required to fully fund any supports or services it has deemed “reasonable and necessary” and that it could not partial funding of supports such as transport to the work or service placements set out in a person’s individual care plan

• Prohibition of public spending on institutional care

In 2013, the EU introduced for the first time ‘ex-ante conditionalities’ that created preconditions for European Social and Investment Funding. These included measures prohibiting use of the ESIF for the maintenance, renovation or construction of residential institutions, while encouraging Member States to prioritise programmes to support the transition from institutional to family or community-based care, where they were determined not yet to have done so.

In the USA, the proposed Disability Integration Act of 2017 would prohibit states or local governments that provide institutional placements for individuals with disabilities who need long-term assistance with daily living activities or health-related tasks, and prohibits insurance providers that fund such long-term services, from denying community-based services that would enable such individuals to live in the community and lead an independent life.

• Strategic duties and regulations to develop community based living

Regulations concerning use of the European Structural and Investment Funds require that – where needs are identified – Member States include measures in their National Strategic Policy Framework on Poverty Reduction concerning the transition from institutional to community based care.

Annex – links to legislation, draft legislation and relevant publications

 

UN Committee on the Rights of Persons with Disabilities General Comment 5 on the right to live independently and to be included in the community

http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DGCArticle19.aspx

 (Disabled Persons) Independent Living Bill 2007

https://publications.parliament.uk/pa/pabills/200607/disabled_persons_independent_living.htm

The Disabled People (Community Inclusion) Bill

https://lbbill.wordpress.com/draft-lb-bill-v-2/

 Law Commission proposals for social care legislation

https://www.lawcom.gov.uk/project/adult-social-care/

Care Act 2014 statutory guidance

https://www.gov.uk/government/publications/care-act-statutory-guidance

‘Rights of Children and Young Persons (Wales) Measure’ 2011

http://www.legislation.gov.uk/mwa/2011/2/contents

The Disability Integration Act 2017 USA

http://www.disabilityintegrationact.org

European Structural and Investment Funds regulations

https://communitylivingforeurope.org/exanteconditionality/

 National Disability Insurance Scheme Australia

https://www.legislation.gov.au/Details/C2013A00020

 Joint Committee on Human Rights report on the right to independent living

https://publications.parliament.uk/pa/jt201012/jtselect/jtrights/257/25706.htm#a13

UN Committee on the Rights of Persons with Disabilities concluding observations following its examination of the United Kingdom in 2017

http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=21993&LangID=E

Personal assistance and the disabled People’s independent living movement.

This is a transcript of a speech given by Baroness Jane Campbell at the launch of the ESRC funded programme ‘Personal assistance relationships and disabled people‘ led by Professor Tom Shakespeare

My very first experience of recruiting a personal assistant came at the age of 21, when Hertfordshire University offered me a place. It was only one of three universities that were minimally accessible to wheelchair users. And I mean very minimal!

There was no such thing as local authority Direct Payments or Personal Budgets. So I used my £30 a week DLA to pay my hall of residence cleaner, to get me up in the morning and put me to bed at night. The rest of the day, was left up to me to hussle students to make me meals, pop me on the loo and basically help me get through the days. In return, I would offer help with lecture notes, essays and steeling library books out of the back staff entrance (the only wheelchair access in/out)! I also made sure I secured a boyfriend early on who became a very willing PA, especially on the undressing in front!

Times have changed but I still look back at that time with a sense of achievement because it was perilously knife edge at times and required untold resilience. Not for the fainthearted – especially when you’re willing helper is too drunk to stand up!

Over the years there has been a PA revolution. It started at the end of the 70s, when half a dozen disabled people defiantly broke out of a residential home and persuaded the local Council to award them the money used to warehouse them, to pay for personal assistants in their own home in the community. In those days it required local authorities to launder the cash through a local voluntary organisation! Highly questionable in terms of legality. However some brave local authorities agreed. The gang of six escapees, led by John Evans, was beginning of the Disabled People’s independent living movement. A movement based on the concept of a right to choice and control over who supports you, in order to facilitate individual life chances.

The laundering approach was never going to provide a chance for all disabled people to take advantage of this new service. The negotiation and administration of setting everything up personal support was complicated and required great negotiation skills. This was liberating for a small number of elite, highly capable, physically disabled adults, but for most it was just too daunting. So the disability movement campaigned for 15 years, for direct payments to be legalised and therefore recognised as a social service duty, which we hoped would help develop the concept with the funding necessary. In 1997 the Direct Payments Act (1996) came into force.

The concept of disabled people employing, training and managing their support, has built an entire industry based on the idea of choice and control for everyone, no matter what your impairment. But all concepts have their ups and downs, especially as on size never fits all. Unhelpful power struggles of who should inform and run the PA industry, inevitably spawned friction between disabled people and the so-called ‘care professionals’ (Local Authorities, traditional charities or private sector agencies. It wasn’t long before these bodies muscled in, fearing their power and livelihoods were in jeopardy. This continues today.

As you will read in the PA Research – For many disabled people, PA’s can indeed give you the choice and control over the assistance you need to live in the same way that others do. It means that many disabled people can go out to work, look after their children, play a part in their family and community.

It means a young disabled person can realise their potential, get the education and qualifications they are capable of. It means a person who becomes disabled half way through their life can return to work and continue their life goals however small or large.

But for others, managing PAs, remains too daunting. Taking responsibility for recruiting, training and managing PAs is no small feat. We are not born HR professionals. So advocacy, peer support, training and decent funding to become a good, legal employer is essential. Choice and control over one’s life does not come cheap when you are disabled. Countless barriers in society, sometimes require costly solutions.

And then there is the relationship to be fostered between 2 people who are thrown together in one home. There can be some difficult relationships to manage – unhappy underpaid PAs, endless paperwork, fraught dealings with social workers and depleted funding are but a few possible challenges in this unique setup.

Over the years, the disabled People’s Independent Living Movement have strived to develop personal assistance policy and practice, so that all disabled people with different needs have access to this form of choice and control. From 2001 – 2010, Centres the Independent run by disabled people, set up information, advocacy, training and peer support services – to ensure disabled people were supported in this new role. Thousands of disabled people including people with learning disabilities began to take advantage of directly managing their own day to day support. Local authority grants for Centres Independent Living, the government funded ILF and local authority PA social worker posts, all helped to build something worthwhile.

And then came the crash! Austerity. Closure of the Independent Living Fund, CIL funding cut, rising numbers of disabled people and a political ideological to shrink the state – combine together, severely damaged the whole concept of a Personal Assistants and Independent Living.

With support budgets being cut to the quick, disabled people are now struggling to exercise choice and control because they are forced to offer low wages, fewer hours and the atmosphere of liberation becomes one of irritated despair and unhappiness on the part of the PA.

For the first time since the gang of six broke out of residential care, disabled people face the horrific possibility of returning to the warehouse. We become judged solely on short term economic unit costs, rather than the service being measures against Article 19 (a right to independent living) of the UN Convention on the Rights of Disabled People.

What most people, especially governments, do not understand, is that the culture surrounding personal assistant independent living services, enrich communities and society and have a cost benefit. Having PAs is not just about furthering one’s own life chances but more importantly furthering the lives of people with whom we share our lives – family, friends, the community. Personal assistants are at the epicentre of this concept. It must continue to be developed as a culture of dynamic mutuality and sharing.

Reciprocity is one of the most important hallmarks of independent living. It swings between the individual’s life chances and ones collective desire and responsibility to contribute to making society a better place. That way we are not the “cared for” client” and the PA is not a low-grade servant, we are experts in the situation of mutuality and coproduction. This research will help us understand that relationship better and work together to ensure we do not lose it!

A rights-based approach to people living beyond dementia

By Kate Swaffer

At the age of 49, I was diagnosed with a younger onset dementia, and was immediately told to ‘go home, give up work, give up university, and to live for the time I had left.’ Over the next few months, this negative prescription of disengagement from living continued, and followed with being told to “get my end of life affairs in order, and to get acquainted with aged care by going to a respite centre one day a month.” At no time was I told it was a terminal illness, not was I give any emotional support for it being one. I quickly coined the phrase, Prescribed Disengagement®, and Trademarked it. Being told there is nothing that can be done, to get our end of life affairs in order, and to get acquainted with aged care, upon diagnosis, is not only unpalatable, immoral and unethical, it is against our human right to be supported to live as well as possible with dementia, not only to die from it. After years of hearing others diagnosed with dementia say they received this same pathway to an immediate pseudo death, I decided it was a human rights issue.

Although I gave up work after to failing my driver’s license test, which I now realise I should have demanded reasonable adjustments to support me to stay at work, I had the sense to stay at university, and, discussing the increasing challenges I was finding with my studies, I asked a lecturer if they thought I should give up university. Luckily for me, their immediate reaction was to say no, keep living the life you want, and we can provide you with disability supports, in the same way we do for all other students with disabilities. After assessment of my disabilities, and strategies put in place to support them, with regular reviews as my symptoms changed therefore causing the disabilities to change, I managed to complete two undergraduate degrees, and have since gone on to complete a Master’s of Science in Dementia Care in 2014, and am currently a Ph.D. candidate at the University of Wollongong. Living beyond dementia is possible, as long as you are supported to do so.

In Geneva at the World Heath Organisation First Ministerial Conference on Dementia, I believe I was the first ever speaker in history with a diagnosis of dementia, to be an invited to present at the United Nations. It was therefore imperative that as Chair, CEO and co-founder of Dementia Alliance International, the peak body and global voice for people with dementia globally, representing more than 37 million people, I spoke up with absolute clarity about our rights. I asked for three things, all of which were included in the WHO Call To Action at the end of the conference.

• People with dementia have a human right to a more ethical pathway of care, including our pre and post diagnostic care, and to more ethical pre and post diagnostic interventions including rehabilitation.
• People with dementia must be treated with the same human rights as everyone else, under the Disability Discrimination Acts and UN Convention on the Rights of Persons with Disabilities
• That dementia research does not only focus on a cure, but also on improving care

One might ask, why was it necessary to place dementia in the human rights and disability rights space? The reality is, in all countries and in different ways our human rights are being breached. For example as few as 10% of people with dementia get a diagnosis in a country such as India. In some western countries, the diagnosistic process is getting better, but the post diagnostic care and support is still in breach of our human rights, and does not include rehabilitation or other interventions to support us to live well. Even the Clinical Guidelines for Dementia in those countries who have them, do not suggest brain injury style rehabilitation, and yet, if I’d had a stroke, I would have been offered every opportunity to get back to living.

My experience is consistent with qualitative studies describing how people with dementia post-diagnosis experience loss of control, decreased activity, poorer relationships and increased negative emotions. This clinical practice post-diagnosis reflects the evidence base with very few non-pharmacological trials for mild dementia, particularly targeting quality of life as an outcome. It is time research started to look at living with dementia, but more importantly that the health care sector supports us to. It is also imperative society as a whole provides us with enabling and empowering disability strategies and support for the disabilities caused by the symptoms of dementia, quite simply, as another human right issue. If we had any other illness or injury causing disabilities, such as losing our legs in a road accident this type of disability support, and rehabilitation would be automatic. It needs also to be for people with dementia, as almost no one is at end stage and actually dying when they are first diagnosed.

I continue to choose to Live Beyond Dementia, and this would actually be relatively easy to translate into practice through provision of clinician training, studies into Prescribing Engagement, as opposed to Disengagement. This could contribute to a paradigm shift in how clinicians manage people recently diagnosed with dementia, and encourage further non-pharmacological research for mild dementia. This would in turn, change perceptions in society about people with dementia, thereby reducing stigma, isolation and discrimination, as well as the fear people have of dementia, which has taken over from cancer in terms of being the most feared disease over the aged of 65. In my next blog I will describe the holistic approach, the disability strategies, and non-pharmacological and psychosocial approaches I employ to live beyond dementia, and which emerging evidence is now supporting.

About the author

Kate Swaffer is Chair and Chief Executive of Dementia Alliance International 

 

 

 

Tell us about your experiences of choice and control over care and support

The Independent Living Strategy Group is made up disabled people and allies from a range of organisations.  It is convened by Baroness Jane Campbell.  The Group is conducting a survey to find out about people’s experiences of choice and control over their care and support.   We want to find out about your experiences in order to share them with the government and the public in the hope that it will help bring about improvements.  We carried out a similar survey last year, and the report of that can be read here

You, or a person acting with your permission on your behalf, can answer the questions here 

If you have any questions or comments about the survey, please contact John Waters, john.waters@in-control.org.uk

Thank you for contributing to this important research.