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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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.

Harnessing the opportunities for independent living

It feels almost impossible to think about opportunities to advance independent living in England, such is the parlous state of the public finances and recent direction of public policy.   But in the spirit of the motto of this blogsite to ‘make hope possible, rather than despair convincing’ I’m going to have a go.  After all, the early pioneers of independent living did so against often unimaginable odds and some of the chief victories of the disability movement happened not under a centre left, but under a conservative government.

From social welfare to social investment

The first thing I want to highlight is how so called ‘austerity’ is not always cover for public spending reductions, but for public spend re-allocation. That is, recent government policy has often been about re-engineering the State to serve a different purpose, not necessarily shrinking the State (though that is clearly a goal as well). Such re-engineering in places appears to signal a trend from a social welfare state to what one might call a ‘social investment state.’ A prime example is the policy of 30 hours a week free childcare for households earning less than £100,000 a year. Here, a significant investment of public resources is designed, it is hoped, to increase labour market participation, increase tax revenues, decrease benefits expenditure and improve children’s life chances. Contrast this with social care, which continues to be viewed not as an investment but as the spiraling cost of an ageing society and is suffering eye watering cuts, or disability benefits, which suffer misrecognition and stigma permitting recipients only to be cast as ‘on the take’ or ‘vulnerable’.   Can we learn from the repositioning of childcare, not as a personal private matter, but as part of the public infrastructure and demonstrate the public interest case for investment in independent living?   This demands both credible, compelling evidence, new ideas for policy and clever strategic communications – something the DRILL programme might usefully support.

Halving the disability employment gap

Some regard this government goal with suspicion and the fact that policy makers and think tanks consistently start by identifying the primary ‘problem’ as the design of benefits and their effect on individual ‘incentives’ to work does little to assuage concern that the real goal is to extend sanctions (including in relation to failure to pursue courses of health treatment and rehabilitation) in order to cut benefits.

However, the commitment is also throwing new light onto the problem of barriers to employment for disabled people. The government has already decided to replace the Work Programme and to increase spending on Access to Work, and a White Paper is on its way.

DWP has pilots underway involving the use of personal budgets to pay for bespoke employment support.   The creation of the joint Department for Work and Pensions/Health ‘Disability and Health Employment Unit potentially offers opportunities to pick up where the Right to Control left off in looking beyond narrow ‘employment support’ at the wider supports a person might require to engage in the labour market. Moreover I feel there is a chance to reposition employment as a building block, rather than mere outcome or expression, of ‘independent living’ – in particular as a route to social connections, challenging the isolation that often predicts wider exclusion.   In this sense, employment and employers become part of the means to the end of independent living.

Health and social care integration

Again, people have many legitimate concerns about what this will mean in practice: that the cultures and approach of the health service will dominate, undermining the social model of disability both at a theoretical level but also in everyday practice as clinical decision making and health outcomes trump everything else; that what money is available among the NHS and local councils narrows down to focus only on ‘healthcare in the community.’ Conversely there are concerns about the implications of integrating two systems based on very different traditions of funding and entitlement.

Yet at the same time there are many areas where the doctrines of early action and prevention coincide with independent living and where the steps required to promote health and well-being are essentially the same as those long pursued by independent living advocates. For example I recently did some work in Scotland where disabled people in one city had been asked about their priorities for health and well-being. Top of their list was having somewhere to go and something to do. Here we can see the goals of choice, control and participation coincide the aim of overcoming isolation.   If resources could be levered out of acute healthcare towards supporting participation under the rubric of prevention of isolation, this strikes me as an opportunity to grab hold of.

Law Commission review of the Mental Capacity Act

With a draft Bill expected this year, the Law Commission consultation on replacing Deprivation of Liberty safeguards proposed that they be replaced with a new system, to be called ‘Protective Care’. The Law Commission suggest that

‘This system is not focused on authorising deprivations of liberty, but instead upon providing appropriate care and better outcomes for people who lack mental capacity and helping their family and carers.’

Patient safety

Bit of a tangential one this perhaps, but patient safety is a major priority for the current health secretary, mostly because of the Mid Staffs scandal but also in light of the death of Connor Sparrowhawk. While his focus may be on what happens to people in hospitals, it nevertheless also raises the question of why some people are in hospitals as opposed to being supported (and treated) in the community. Certainly the recent meeting of Connor Sparrowhawks parents with the Health Secretary indicated that this was the way he identified the problem.

Care Act implementation

We should make the very most of the opportunity presented by the Care Act.  Yes, it seems absurd to talk about social care as offering any opportunities in the face of the scale of cuts being implemented, but at the same time we have a number of key things enshrined in law and the opportunity is to positively shape the manner in which they are implemented – whether information and advice, care plans, personal budgets or independent advocacy. This is partly about monitoring, such as the report produced by the Independent Living Strategy group last year. But it is also about promoting ideas and showcasing best practices – about influencing by demonstrating the art of the possible.   In particular, it is about showing that independent living, far from being a problem, offers much needed solutions.

Beyond the State

Finally, I have concentrated here on the role of the State in advancing independent living, but in practice what makes the greatest difference in the years to come is likely to lie beyond the State – new technologies, the changing nature of the workplace, social action, new civil society institutions, social attitudes.   I will explore these in a separate post soon.

I am sure there are other opportunities, just as I am sure people will regard what I say above as hopelessly naïve, but I look forward to the debate.

Integration of health, social care and beyond – mergers, acquisitions or hostile takeovers?

All our lives rely upon functioning infrastructure and on mutually understood and commonly practiced rules and rituals. From the moment we wake up to when we go to bed and on through the night we depend on stuff to just… work. From switching on the light in the morning, checking our Twitter feed, making a cup of tea and getting a shower to catching the bus or train, or driving our usual route to work, to arriving at work, switching on our computer, accessing our emails, using the photocopier, making ourselves a cup of tea, going to the toilet, a post work drink, making our way home, making our dinner in the oven, phoning friends and settling down to watch the TV.   Only if these things function seamlessly can we function seamlessly. All the while, multitudes of different actors are each independently ensuring that this infrastructure is working properly.

When the chain ceases to function seamlessly, we can no longer function seamlessly.   There’s no hot water to take a shower. The train is cancelled. We do not have an internet connection and so on.   Sometimes we wrongly assume that things are going to be there for us when we need them, only to find out too late that they are not – like flood defences, or social care.

To these ends it seems intuitive to welcome coordination and closer integration of different elements of public infrastructure, including health and social care, as a vehicle for creating more seamless support.   Yet with such integration come risks of both ‘domination’ and ‘infection’.

There is clearly a trend towards the integration of health and social care. On the one hand this makes sense in removing some of the nonsensical and artificial divisions that exist between the two systems, and in making better use of public resources, in particular through early action and prevention. It also offers the prospect of leveraging resources from the still popular and comparatively protected and well-funded NHS into the still largely unknown, already under-funded and increasingly decimated social care system. Yet there seems a genuine risk that social care simply becomes ‘healthcare in the community’, with health outcomes dominating strategic decision-making and the outcomes attached to individual packages of support. In this scenario social care is increasingly positioned as an answer to the pressures of the NHS and little more – an acquisition or hostile takeover, not a merger – and there is certainly evidence of this in the recent rhetoric of politicians from all sides and from the head of NHS England, Simon Stevens. Despite the Care Act, the role of social care in supporting wider dimensions of ‘well-being’ as ends in themselves, such as participation in family and community life or employment could be overwhelmed.

Regarding infection, the risk cuts both ways: healthcare largely remains a system in which professionals knows best, whereas social care has at least strived to embrace notions of self-directed support. On the other hand, healthcare remains overwhelmingly focused on improving people’s lives, irrespective of means, whereas social work is increasingly focused on gatekeeping ever-scarce resources and on managing risk.

It seems probable that we will soon be talking about how wider public infrastructure might be more closely aligned or integrated, including for example employment support, support with education and social security.   The government has recently announced its plans to devolve Attendance Allowance to local councils.   In Scotland, to which much of the disability benefits system is to be devolved, the Convention of Scottish Local Authorities (Cosla) is already making a bid to administer the benefits alongside its roles in relation to integrated health and social care. A new ‘Disability and Health Employment Unit’ has been established under the auspices of the Department for Work and Pensions and Department for Health.

Which imperatives will dominate as these areas of policy and delivery become more closely aligned and integrated?   What culture and ethos will infect the whole? Can DWP’s culture of behavioural management, conditions and sanctions successfully combine with social care’s goal of restoring self-determination to those requiring support (certainly the experience of the Right to Control pilots suggests not)?   Will getting well become an obligation, with people forced into courses of health treatment as a condition of benefits entitlement, especially in relation to mental health for example?   Will health treatment increasingly be subject to the same gatekeeping as social care? How can the idea rooted in modern ‘welfare to work’ policy that receiving benefits amounts to dependence be combined with the idea of people receiving money in the form of direct payments from the State to support their independence?   And what of public attitudes – which differ markedly in relation to support for the NHS when contrasted with social security or social housing for example? Will greater integration help soften attitudes where they are presently harsh, or harden them where they are currently more benign?

There is a grave risk that we are on a slippery slope towards integration without first asking what the various items that are being integrated were originally for, how they function in different ways and hence what might be lost as well as what is to be gained.   How can we harness the ‘added shareholder value’ of integrating public spending and services without the risk that hostile takeovers rob us of those things we hold dear while increasing the influence of those we object to most?