Will new safeguards protect liberty and human rights?

Community Living 

Community Living

— Spring 2019

legal: liberty safeguards protections

Will new safeguards protect liberty and human rights?

The Liberty Protection Safeguards, due to replace the Deprivation of Liberty Safeguards, appear hurried and driven by cost. Will they actually work more effectively? asks Yo Dunn

The proposed Liberty Protection Safeguards (LPS) are intended to protect the rights of people who do not have the mental capacity to make decisions about their care.

They are going through parliament and are scheduled to replace the Deprivation of Liberty Safeguards (DOLS) later this year.

The DOLS system was hastily introduced in 2007 to safeguard the rights of adults, including those with learning disabilities and/or autism, who had been deemed to lack the mental capacity to consent to circumstances that deprived them of their liberty in hospitals, care homes or elsewhere.

It is widely acknowledged that this overwhelmed system needs reform and the Law Commission spent three years producing detailed proposals for a replacement system.

However, the new bill is very different from the Law Commission’s proposal.

The new system proposes that authorisation to deprive a person of their liberty should be sought during care planning, rather than afterwards. The ‘responsible body’ (a local authority or care commissioning group) will need to be satisfied that:

  • The cared-for person has a mental disorder, lacks capacity to consent, and the arrangements are necessary and proportionate to prevent harm
  • The cared-for person and any family or friends involved with them have been consulted to try to ascertain their wishes and feelings about the arrangements
  • A pre-authorisation review has been carried out by an approved mental capacity professional (AMCP) (likely to be similar to a best interests assessor) to check whether the authorisation conditions have been met, or an “independent person” (who is not required to have had any specialist training) has checked whether it was reasonable for the responsible body to decide whether the conditions have been met.
  • Shift in responsibility
  • There are some positives. First, the name highlights that the purpose of the system is the positive protection of rights. The system also enables the authorisation of arrangements in any and multiple locations and transport arrangements.
  • Responsibility for authorising deprivations of liberty in hospital or NHS-funded care will shift to the NHS. This may encourage NHS bodies to think harder about issues of capacity, necessity and proportionality when arranging care involving restrictions.
  • Definition defects
  • However, there are serious concerns.
  • A proposed statutory definition of ‘deprivation of liberty’, added to the legislation at a late stage, looks rushed and ill thought through.
  • The definition is claimed to have the same meaning as article 5 of the European Convention on Human Rights (1998) and an attempt has been made to replicate the definition from the Cheshire West case (P v Cheshire West & Chester Council; P & Q v Surrey County Council, 2014). This case held that an adult is deprived of their liberty in any care situation in which they are:
  • Subject to continuous supervision and control and
  • Not free to leave (in the sense of moving out of the placement).
  • However, the wording appears inconsistent with the case law on article 5. It is expressed negatively – in terms of when a person is not deprived of their liberty – while article 5 is a positive right, which public bodies have a positive obligation to uphold

Second, the proposed definition states that a person is not deprived of liberty if they are not subject to continuous supervision and are free to leave temporarily, even if subject to supervision while doing so. This confusing wording does not appear to reflect the case law, which carefully considers the power imbalance between the cared-for person and those providing care.

Third, the definition attempts to reflect the decision in R (Ferreira) v HM Senior Coroner for Inner South London and others [2017], by stating that a person is not deprived of their liberty if receiving treatment for a physical illness or injury. However, the decision in Ferreira carefully emphasised that the root cause of the loss of liberty in that situation was the person’s extremely serious physical condition. The government’s wording goes far wider and potentially removes human rights from a broad swathe of situations involving adults who lack capacity.

Fears for independent scrutiny

There are also concerns about independent scrutiny. The crucial role of the AMCP will be restricted and, for the most part, they will carry out a pre-authorisation review only where there is reason to believe a person objects to arrangements.

This will leave those who passively acquiesce or are unable to express any objection deprived of their liberty with little or no independent scrutiny.

For them, all that will be required is a paper exercise where an ‘independent person’ – who does not have to see them or their family or have any special training – confirms that the responsible body is reasonable in concluding the authorisation conditions are met.

For adults living in care homes, the responsible body will be able to decide whether to carry out the process of assessment themselves or delegate this to care home managers.

However, with no additional funding so far allocated to carry out these responsibilities, there is a substantial risk that many hard-pressed local authorities will delegate these functions (and their costs) to care home managers. This will mean care home managers will have to:

  • Provide all information to the responsible body, including capacity and mental health assessments
  • Decide who appears ‘to have appropriate experience’ to determine whether the arrangements are necessary and proportionate
  • Decide whether they think a person is or is not objecting, and therefore whether they should be referred to an AMCP
  • Consult with all the interested parties, so family and friends may not be heard by anyone else.
  • This is a seriously worrying list. Registered managers do not have the knowledge, skills or experience to make the majority of these decisions. Under the proposals, they will be expected to take on all these new responsibilities with a mere half day of training, which is wholly inadequate to ensuring they understand how to make decisions that are legally defensible and respect human rights.

 Care home managers could find they have a conflict of interest if they have to make decisions over deprivation of liberty

There is a further concern in that the majority of care home managers are employees of private companies, whose interests may well conflict and compete with those of adults whose deprivation of liberty is being authorised. Even Care England, which represents independent providers of adult social care, has expressed deep concern about this “inherent conflict of interest” (Care England, 2018).

There is as yet no clarity on the funding of these necessary assessments.

 “NHS bodies may have to think harder about capacity, necessity and proportionality regarding care with restrictions”

  • All this carries a serious risk that there will be no meaningful scrutiny of whether the care of adults in care homes is consistent with their human rights. While decisions will theoretically be open to challenge on human rights grounds for those whose care is publicly funded, few if any will have anyone able to take such action on their behalf.
  • Threat to advocacy and support
  • Access to advocacy and support appears to be under threat from the proposals in a number of ways:
  • Information about an authorisation and a person’s legal rights will only have to be given to them after the authorisation has been granted, leaving them (or their representatives) with the uphill task of undoing what has already been done
  • Responsible bodies will determine whether a person requires an independent mental capacity advocate (IMCA). Local authorities that are already relying on a care home manager to do this are unlikely to act on any further information about a person’s need for an IMCA
  • There is no general right to an IMCA for people detained under the LPS. The responsible body does not have to appoint an IMCA where there is an ‘appropriate person’ (such as a friend or family member) to represent and support the person, with their consent or in their best interests. It seems unlikely that hard-pressed councils will painstakingly check that genuine informed consent has been given
  • Both the cared-for person and an appropriate person will get an IMCA appointed only if they request one. This is a serious weakness and risks repeats of Mark Neary’s experience of not knowing or being able to enforce his son’s rights (Neary, 2014)
  • The responsible body will have to ‘take all reasonable steps’ to appoint an IMCA. It is weaker than the requirement in the Care Act that the authority ‘must arrange for’ an advocate ‘to be available’ and is not a watertight statutory duty.
  • The bill omits some important aspects of the Law Commission proposals, including a requirement that best interests decisions ‘must give particular weight to any wishes or feelings ascertained’ and a right to bring civil proceedings for unlawful deprivation of liberty against private care providers. These are glaring omissions which are crucial for human rights safeguards and greater compliance with the UN Convention on the Rights of Persons with Disabilities.
  • Tweaks but no rethink
  • Initially, the proposals were almost unanimously condemned throughout the social care sector.
  • The Law Society (2018) said the bill lacked ‘sufficient safeguards’ and requires ‘extensive revision’. Disability Rights UK (2018) saw the bill as a step backwards for rights and the Association of Directors of Adults Social Services (2018) expressed ‘serious concerns’.
  • The government has made some small amendments, many of which are welcome. However, it was clear that it would not pause or rethink the bill and is determined to take it into law. Government statements suggest that the primary motivation behind the reforms is to reduce costs.
  • Reform of DOLS is, indeed, urgent. The existing situation cannot be sustained. However, a hurried reform, driven too heavily by the demands of efficiency and cost, is not the answer.
  • Minor tweaks to the bill are not sufficient. The proposed system will provide utterly inadequate protection for human rights and will not safeguard the liberty of disabled adults. It remains to be seen what happens when the new law is tested against the Human Rights Act in the courts.

Yo Dunn is a social care legal framework and autism trainer and consultant. She provides specialist and bespoke training to organisations in the north of England. consultyo.com

  • References
  • Association of Directors of Adults Social Services (2018) The Mental Capacity (Amendment) Bill – ADASS Statement Ð 4th September 2018. http://tinyurl.com/y5mmqk2w Care England (2018) Conflict of Interest. Press release. 6 September. www.careengland.org.uk/news/conflict-interest
  • Disability Rights UK (2019), 5/9/18, Mental Capacity (Amendment) Bill Will Take Our Rights Backwards. 5 September. http://tinyurl.com/yyhnd6jz
  • Human Rights Act 1998. Article 5. European Convention on Human Rights. www.legislation.gov.uk/ukpga/1998/42/schedule/1
  • Law Society (2018) Parliamentary Briefing: Mental Capacity (Amendment) Bill 2018. House of Lords Committee Stage. 3ÊSeptember. http://tinyurl.com/y375mxj9
  • Neary M (2014) The Court of Protection: Steven Neary’s Story. London: Legal Action Group. http://tinyurl.com/y43fol8m
  • P v Cheshire West & Chester Council; P & Q v Surrey County Council [2014] UKSC 19. http://tinyurl.com/yy8xu5ky
  • R (Ferreira) v HM Senior Coroner for Inner South London and others [2017] http://tinyurl.com/y28wmuap

If you don’t subscribe but would like to support us, every small donation helps us continue our work. No donation too small. You can make this for no charge at Paypal Giving using a debit or credit card.  DONATION 

If you shop on line, why not join our supporters at easy fundraising. Costs you nothing but every purchase makes a small charitable donation to us. https://www.easyfundraising.org.uk/causes/clinitiatives/

More stories about:

Universal credit: progress and pitfalls

Charlie Callanan 

Charlie Callanan

— Spring 2019

As the rollout of universal credit continues, Charlie Callanan reports on progress and changes to this complex benefit, including a court ruling that is likely to be helpful

As the government grappled last year with its plan to transfer benefit claimants to universal credit (UC), it was forced to pause and rethink its approach.

It has now decided to carry out a limited pilot of the ‘managed migration’ process, instead of the planned ‘big bang’ approach.

This will involve transferring 10,000 people claiming ‘legacy benefits’ to UC between July 2019 and July 2020. All other managed migration will happen from December 2020 until late 2023.

‘Natural migration’ to UC continues to be required for most claimants who have a relevant change in their circumstances. Examples include a when a person becomes unfit for work or a partner moves into or leaves the household.

The rollout of ‘full-service’ UC – where all new claimants for certain benefits have to claim UC online – was completed in December 2018.

Circumstances that would have previously led to a claim for a means-tested benefit legacy benefit, such as income-related employment and support allowance (ESA), housing benefit or tax credits, now mean most claimants have to claim UC.

Exceptions for severe disability

A court decision has protected the income of claimants receiving severe disability premium who were worse off with universal credit

However, there is now an exception to the above, in both natural and managed migration, which is likely to be helpful for many claimants with a learning disability. This exception is where they are or have recently been entitled to severe disability premium (SDP).

“If they are entitled to less under UC, they will be given a ‘transitional amount’ so receive the same amount”

A regulation was introduced in January that prevents people who are receiving SDP (or who had received it within the month before making a new claim) from moving onto UC. The SDP is an element in legacy benefits that is payable to some disabled people.

This follows a legal challenge in the high court by two claimants who had no choice other than to claim UC, but found they were then financially worse off than on their legacy benefits (TP and AR, R (On the Application of) v Secretary of State for Work And Pensions [2018] EWHC 1474 (Admin). This was because there are no allowances payable within UC equivalent to the disability premiums available in legacy benefits.

So, if a recipient of SDP has a change of circumstances, they are able to keep or make a new claim for a legacy benefit as they cannot (for now) claim UC. This means that they retain the amount  they currently receive, including SDP and enhanced disability premium where applicable.

Any client who is receiving a personal independence payment daily living component, a disability living allowance (DLA) care component or attendance allowance (if older) may be entitled to one or both premiums. If they are not getting these or are not sure if they are, they should get a benefit check from an experienced welfare rights adviser.

The government has promised that people moved over to UC through managed migration will not be worse off after transfer. If ‘managed’ migrants are entitled to less under UC than under their legacy benefits, they will receive a ‘transitional amount’ to top up their UC to the previous total.

Many claimants who were in receipt of SDP have already been transferred to UC after their circumstances changed since UC was introduced. The government has stated that all these claimants will be identified and given a lump sum compensation payment and an ongoing monthly transitional protection payment within their UC.

However, those who migrate naturally will not have access to transitional protection, except claimants who have already moved and were previously entitled to an SDP.

Working parents

A positive change has been made around the amount that some households can earn before their UC award is reduced.

This amount, the ‘work allowance’, was increased by £1,000 a year from April 2019. It applies only to households with a child or children or where one person (including a partner) has limited capability for work.

Since February, families with more than two children are no longer able to claim child tax credit and will need to claim UC (apart from where the SDP exception applies – see above). This two-child limit means the benefit calculation for affected families includes only two child elements. In some circumstances, the two child limit is not applied.

Pensions

There is a change for couples where one partner is aged above and the other is aged below pension credit qualifying age. From 15 May, they will no longer be able to make a new claim for pension credit but will have to claim UC instead.

Mixed-aged couples who are already claiming pension credit can remain on it as long as they continue to satisfy the qualifying conditions.

Contributory benefits

Amid the chaos of the changeover to UC, people may still be able to claim benefits based on their national insurance contributions, including contributory ESA and contribution-based jobseeker’s allowance (now called ‘new style’ ESA and JSA). These may be paid alone or with UC on top to help with a low income or rent or other housing costs.

Charlie Callanan is an adviser and writer on welfare rights

If you don’t subscribe but would like to support us, every small donation helps us continue our work. No donation too small. You can make this for no charge at Paypal Giving using a debit or credit card.  DONATION 

If you shop on line, why not join our supporters at easy fundraising. Costs you nothing but every purchase makes a small charitable donation to us. https://www.easyfundraising.org.uk/causes/clinitiatives/

More stories about:

Letters: Can community residents genuinely choose to leave? residential care can be a … positive decision; guidance on sex and relationships

Community Living 

Community Living

— Spring 2019

Letters:

Can community residents genuinely choose to leave?

Andrew Plant in ‘Who decides how best to live?’ (winter, 2018-19) argues that Camphill communities should be afforded equal status as valid living choices for people with learning disabilities alongside other forms of support in the community.

His commitment to choice sounds good but I found myself wanting to ask him about a choice he had not mentioned for Camphill community residents: how easy is it to leave?

It may be technically straightforward – but does the environment help people to think about it as a possibility? Do people get a chance to really experience life outside the Camphill community and think about whether they want to join it?

If not, then how easy is it for people to understand what leaving a Camphill community might entail? Or do they tend to choose to move in then stay for life?

With no experience of the outside world who, once settled in, would ever choose to leave?

Personally, I would be happier to see people choosing to opt in if it were clear that the choice remains to opt out later.

My guess is that there are gains and losses when people move into a village or community that is somewhat removed from the rest of the world. The gains, including meaningful relationships and worthwhile activities, may indeed be great, but a genuine choice to leave should not be one of the losses.

Sean Kelly Former chief executive, Elfrida Society

Living in residential care can be a correct, positive decision

The Residential Forum’s 30 years celebration of the Wagner report, Residential Care: a Positive Choice, at the House of Lords was a timely reminder of the positives of good residential care embedded in the community.

The report sought to shift the view of residential care as a last resort to one of valuing its role as a vital part of community care, with an emphasis on the importance of choice and participation.

This type of care should be a positive choice by any prospective resident, who should retain their rights as a citizen with measures to ensure they can exercise them.

Homes should strive for people’s full involvement and ensure quality of life not only in rhetoric but also through resources. Given the squeeze on funding, homes need to be asserting principles that are as relevant today, and ensure that their fees match these needs.

Many adults with learning disabilities are developing inclusive lives in tenancies. The Residential Forum’s celebration reminds us that good, principled, domestic-style residential homes can offer great support and open up life for some of our most vulnerable people.

It is about what is right for different individuals.

Rose Trustam Lancashire

Care Quality Commission courageous to publish guidance on sex and relationships

We know people with a learning disability continue to experience many barriers in being able to develop and maintain safe, intimate relationships.

One of these is a reluctance among some service providers to address this issue, including a failure to offer support staff the necessary guidance and training to respond to people’s sexuality needs in a professional, confident manner.

Furthermore, there has been little incentive to open what can be seen as a can of worms because the key social care overseers, including the Care Quality Commission (CQC), local authority contracts departments and social workers, have rarely asked questions about support for personal relationships as a measure of service quality.

This is not to suggest that wonderful examples of individuals and organisations who have overcome the barriers to finding love do not exist – indeed, your publication has done much to promote these.

Against this background, it is pleasing that the CQC has, at last, had the courage to publish guidance on sexuality in care and support services. This outlines areas relating to sex and relationships that inspectors may explore during a visit, such as policy and information provision, training for both staff and service users, responses to difficult situations and legal implications.

Although generic in nature, the guidance has much to offer service providers and recipients as it provides a new, albeit rudimentary, framework for expectations.

Both Supported Loving and the Lancashire Learning Disability Friends and Relationships Group, which were consulted about it, emphasised the need to focus as much on supporters’ enabling role as on safeguarding.

There is still work to be done, including the introduction of mandatory staff training. Nevertheless, if the fear of opening a can of worms rests on ending up with more trouble than you bargained for, this document should offer some relief in the form of direction, clarity and information.

It is a genuine effort on the part of the CQC to support change. Let’s congratulate them on a brave start and hope the guidance motivates and inspires providers.

Sue Sharples

Director, U-Night Group, Lancashire

Relationships and Sexuality in Adult Social Care Services (including an easy-read version) can be downloaded from http://tinyurl.com/y2ctk6ws

More stories about:

Let him have it: a victim of ‘justice’

Susanna Shapland 

Susanna Shapland

— Spring 2019

Derek Bentley, a ‘three-quarter witted boy’, was hanged for a murder he did not commit, despite pleas from MPs and a public outcry. Susanna Shapland investigates the teenager’s background and how much he really understood about his court case

On 2 November 1952, two teenage boys were seen climbing onto the roof of Barlow and Parker’s confectionary warehouse in Croydon. The younger of the two, 16-year-old Christopher Craig, habitually carried a gun and did so that night. He used it to fire at the arresting officers, wounding one and killing another, PC Sidney Miles.

The other teenager was 19-year-old Derek Bentley. While Craig had fired the fatal shot, both youths faced a charge of murder over the death of PC Miles, although only Bentley was old enough to be hanged.

Under the principle of joint enterprise, it was argued that Craig and Bentley had been unified in their intention to not only break into the warehouse but also resist arrest by force, evinced by the fact that they were both armed.

Although only Craig had a gun, Bentley had a knuckleduster and a small knife. It therefore did not matter that Craig had shot PC Miles, as Bentley was considered guilty by association.

Moreover, three police officers stated that Bentley knew Craig was armed and had shouted, ‘Let him have it, Chris,’ inciting him to open fire.

Debates centred over whether Bentley meant this as an instruction for Craig or as a plea for him to hand over his weapon, but it is probable that it was not said at all.

Bentley always denied saying it and Craig denied hearing it, as did another officer whose evidence was not considered.

Nevertheless, in a two-day trial in December 1952, the official version of events was accepted without murmur, both defendants were found guilty – Bentley with a recommendation for mercy – and Lord Chief Justice Goddard sentenced Bentley to death.

Derek Bentley’s grave “they fought to the end’ reads a neighbouring stone in the family plot

Derek Bentley’s grave “they fought to the end’ reads a neighbouring stone in the family plot

A ‘soft’ boy

Derek Bentley was born in 1933 in London. His sister Iris described him as a ‘soft’ boy who was close to his mother and loved animals. He would stop to pet a cat on his way to school and lose all sense of time, then get into trouble for being late, a tendency that would later cost him his job as a road sweeper.

He hated school, which was not helped by his frequent absences due to severe headaches – later thought to be petit mal (absence) seizures – and occasional full-blown epileptic seizures.

His patchy school attendance and epilepsy were coupled with what a hospital doctor’s report in 1949 called a ‘congenital lack of intelligence’. The following year, his IQ was recorded as 66 – ‘borderline feeble-minded’ – his reading age as 4 years and his mental age as 10 years. He was called up and rejected for national service, classed as grade IV or ‘mentally subnormal’.

He left school at 15 unable to read or write. This later led to questions being raised as to how he had understood his police statement, which he had supposedly signed numerous times despite barely being able to spell his own name.

Much of this information was dismissed by JCM Matheson, the principal medical officer at Brixton Prison. Matheson decided that Bentley’s Òlow intelligence’ was not enough to certify him as ‘feeble minded’, believing it to be due simply to a lack of education, exacerbated by parental overindulgence and an absence of discipline. He was therefore fit to stand trial.

At the trial, Bentley made a poor witness. His denial of evident truths discredited his entire performance, leading Craig’s barrister John Parris to comment that ‘not only was Bentley a moron but he was a lying moron’.

Iris Bentley thought this was an extension of her brother’s tendency to ‘just pretend things hadn’t happened’, when he knew he was in trouble. She believed he simply did not understand what was taking place in court, but added that neither did the rest of the family, saying it was ‘like playing a game where you didn’t know the rules’. In this game, the stakes were high.

Many of the reports into Bentley’s mental capacity were made widely available only years after his execution, but one person who had access to them at the time was home secretary David Maxwell-Fyfe.

The night before Bentley’s execution, Parris accompanied a delegation of MPs to beg Maxwell-Fyfe to grant a reprieve. He refused. Turning to go, Maxwell-Fyfe observed that ‘everything you have urged in his favour – his feeble-mindedness, his illiteracy, his epilepsy and so on – merely goes to confirm the conclusion that I had already come to. He is a young man that society can well do without’ (Parris, 1991).

Despite appeals, petitions, public outcry and debates in parliament – Reginald Paget MP QC referred to him as a ‘three-quarter witted boy’ – Derek Bentley was hanged on 28 January 1953.

Bentley was pardoned in 1993 and his murder conviction overturned in 1998. 

Bibliography

Bentley I, Dening P (1995) Let Him Have Justice. London: Sidgwick and Jackson

Medak P, director (1991) Let Him Have It. Film

Parris J (1991) Scapegoat. London: Gerald Duckworth.

Trow MJ (1992) Let Him Have It, Chris. London: Grafton

Yallop DA (1971) To Encourage the Others. London: WH Allen

If you don’t subscribe but would like to support us, every small donation helps us continue our work. No donation too small. You can make this for no charge at Paypal Giving using a debit or credit card.  DONATION 

If you shop on line, why not join our supporters at easy fundraising. Costs you nothing but every purchase makes a small charitable donation to us. https://www.easyfundraising.org.uk/causes/clinitiatives/

More stories about:

Ending institutional abuse scandals

Community Living 

Community Living

— Spring 2019

          institutional abuse

          Ending institutional abuse scandals

Was the chance to halt institutional abuse after the Winterbourne View scandal missed? Only stronger community services and radical action to shut down private institutions will stop history repeating itself, says Simon Duffy

Scandals are milestones on the long journey towards the liberation of people with learning disabilities. Sometimes they become important turning points, but often they lead to no meaningful change.

In the case of Winterbourne View, it looks as if we have missed our opportunity. A great deal of money, energy and ink has been spent, but it has been spent on the wrong things.

After the scandal broke, I was contacted by a researcher from a London-based think-tank. He was astonished by the violence and humiliation he had seen on the Panorama programme; I was astonished at his astonishment.

For those of us who have dedicated our lives to inclusion, deinstitutionalisation and community living, it is humbling to realise that the public, politicians and policy experts do not understand that institutional abuse is systemic, persistent and severe.

Winterbourne: the ‘least bad’

I met a group of families whose children had been at Winterbourne View. All agreed that this home was the ‘least bad’ service their children had experienced.

These families knew their children (now adults) would never be safe in this kind of institutional setting, many miles from home, locked into inhuman regimes of control and punishment, tranquillised and abused – physically, sexually and emotionally.

They also shared a common experience of being let down by services. They were not offered flexible support; instead, their child was placed in a care home or residential school. Understandably, the young person would get angry and act out, so they were moved again – further away from home into increasingly institutional settings.

Four points to end abuse

What was unusual about Winterbourne View was not the abuse but the fact that the abuse had been discovered.

When we discover something awful, we prefer to treat it as an exception, a one-off problem, something that can be solved by better leadership, new regulations or a grand government initiative.

However, you cannot solve a major systemic problem without understanding it. In the case of institutional abuse, this means breaking the cycle of institutionalisation at four critical points:

First, we must support families and communities as early as possible and enable them to design ongoing support solutions that help people live as citizens within their communities. Austerity has undermined this approach; today, local services are slashed as expensive institutional services continue to grow.

Second, we must close down institutional services. Foolishly, the NHS has focused on cutting its own local assessment and treatment units (inadequate as they are) while continuing to fund private sector hospitals that feed on local system failure. This is the wrong way round; we must bring the people and the money home, not reduce the ability of local services to respond to problems.

Third, we must ensure that funding for communities is controlled locally. Hard-pressed councils are tempted to let people become the responsibility of a better-funded but centralised NHS. Instead, we need an NHS that is accountable to local people and works with them to develop the community support needed to avoid institutionalisation.

“He was astonished by the violence and humiliation;

I was astonished at his astonishment”

Finally, we must begin to demonstrate more clearly that institutionalisation is not a failure in the quality of services – it is a failure in human rights.

In future, we must talk more explicitly about false imprisonment, segregation and the crimes committed against people who have been placed in the custody of the state. Only then will we make real progress.

Simon Duffy is director of the Centre for Welfare Reform and secretary to the international cooperative the Citizen Network

If you don’t subscribe but appreciate our open articles you can make a small donation for no charge at Paypal Giving using a debit or credit card.  DONATION  No donation too small – it all helps our charity to keep speaking out.

Further reading

Alakeson V, Duffy S (2011) Health Efficiencies: The Possible Impact Of Personalisation In Healthcare. Sheffield: Centre for Welfare Reform

Brown F, Dalrymple J (2018) A New Way Home: a Personalised Approach to Leaving Institutions. Sheffield: Centre for Welfare Reform

Duffy S (2015) Getting There – Lessons From Devon & PlymouthÕs Work to Return People Home to their Communities from Institutional Placements. Sheffield: Centre for Welfare Reform

After the Winterbourne View scandal, a great deal of money, energy and effort was spent – but on the wrong things

More stories about:

Success in a bottle

Community Living 

Community Living

— Spring 2019

Interview

           Success in a bottle

A London brewery is making a name for itself with new beers – while proving people with learning disabilities make great ale. Sean Kelly went to meet the team and drink to its health

Ignition is a flourishing new brewery in south London that employs a majority of people with learning disabilities on its nine-person team.

This has brought them some publicity but Nick O’Shea, who runs the company along with Will Evans, does not want this to be their unique selling point.

‘We struggle with this because, you know, should it really be news? People with learning disabilities get a job. Is that really a news story?’ he muses. ‘Are our expectations that this is impossible?’

The important thing for the brewery is that it produces really good beer – which it does.

‘We don’t compete with charitable products – we compete with the beer market. Because you’re not going to buy a charity beer. Well, you’ll buy it once, but we genuinely believe it’s about people buying a good product. Otherwise, we would basically just sell beer at Christmas.

Ignition is clearly a friendly place to work and the team all insist on first names. Tash and Chris show me around the brewery.

Tash is the qualified brewer whose skills are at the heart of the business and who oversees the whole process of brewing and directing the team members who help.

Chris enthusiastically explains how things work. He shows me the mash tun, which is almost as tall as him, and the large wooden paddle with which the mash is stirred by hand.

He and Tash explain the process and the ingredients involved in brewing beer. Chris is admirably concise about what happens next: ‘You keep it somewhere dark. When next week comes, you can drink it.’

 

Michaela (left) and Jill get the beer ready; top: Chris causes a stir at the mash tun

Well oiled

The brewery makes about 1,000 bottles of beer a week. They produce three beers: a pale ale they call South of the River, an India Pale Ale called Jump Start and a porter known as Well Oiled Machine.

Purely in the interests of research, I have tried all three and can happily report they are great. More to the point, my son Liam – who is a serious craft beer fan – also gave them a big thumbs up.

Nick says the original idea for the brewery came while he was volunteering at the Tuesday Night Club at Lewisham Mencap. Many people were unemployed yet were clearly employable so he decided to help. The only question was how.

‘You either say to Tesco’s and Sainsbury’s: ‘Can you take some of our guys?’ And that’s just going to go on forever … Or you take matters into your own hands.’ In the end, he says: ‘We just decided we were going to brew.’

Nick had never brewed beer before and does not even drink much of it. So, that’s two brewer stereotypes disposed of right there. However, his day job as an economist meant he could easily identify brewing as a self-starting business with the potential for decent profit margins.

He points out that brewing is labour intensive and involves a number of straightforward, learnable tasks, such as filling bottles or labelling them, which are ideal for a team learning the trade.

As an example, he says ‘the process of bottling the beer is very easy. Someone gets the bottles out, someone washes them, someone stacks them, someone fills them, someone caps them.’

Come and brew

I ask how they chose the team members. ‘We leafletted everybody at the Tuesday Club, a weekly Lewisham Mencap disco, and said ‘Do you want to come and brew?’ and, apart from one addition, the team we have now are those who said yes. So, they picked us.’

The brewery has expanded and, after a crowdfunding campaign, opened the Taproom bar, where they sell beer directly to the public.

For the crowdfunding, Nick and Will made a short film on a mobile phone. They put it online on 3 May and, a month later, had raised £24,000. Quite a bit of that came in the form of presales; this involved people signing up to buy, for example, a three-month supply of beer. In effect, this part of crowdfunding is a loan they have had to service and repay.

This response showed that the demand was there. “The public just said ‘this is a great idea’,” says Nick.

Ignition Brewery is a company limited by guarantee; there are no shares or ownership. In the hopefully unlikely event of the brewery closing, any assets would go to Lewisham Mencap.

I sit with the team as they put labels onto bottles by hand. It is a sociable job and people chat and laugh as they work. The atmosphere is good and it is easy to see everyone is pulling in the same direction and wanting the brewery to be a success.

Putting the label onto the front of the bottle is relatively easy to get right (it has to be put on straight), but the back label has to match up neatly behind the front one, which is a bit more tricky and takes more care.

 Nick lines up the bottle labels – a sociable job

I chat with Michaela as she works. She tells me she has been involved with the brewery since it started in 2016. Chris joins us and is keen to try out the role of interviewer. He asks her how she is getting on in her job. ‘I am doing fantastically well,’ she tells him. ‘I agree,’ says Chris.

Michaela tells some of the brewery’s history. For two years, Ignition had only the back room for brewing but, in the past six months, it has been able to use a large front room, which has become the Taproom bar. As a result, they are now putting beer into kegs (barrels for draught beer) as well as bottles.

l-r: front row: Jill, Tash, Nick (founder) and Chris; back row: Nick, Michaela, Will, John

The Taproom is open several evenings a week so the brewery employs a bar supervisor, Sarah, who oversees work in the bar area. Team members take orders, serve the pints and operate a till which has diagrams to show each beer. The bar is cash free so staff do not have to count money and calculate the correct change.

‘It is such a wonderful place to be working,’ Michaela says. She tells me about a previous job which sadly ended in redundancy. She is all too aware that the vast majority of people with learning disabilities are unemployed.

‘If it hadn’t been for Nick who started the brewery, I’d probably have been in the dark somewhere, because it’s never easy for people with learning disabilities to get jobs. All you need is someone who wants to make it possible for people with learning disabilities,’ she reflects.

Out on the high street

The Taproom, which fronts Sydenham High Street, is a visible sign of the brewery so is great for publicity. It closes around 10pm, so people often drop in to have a beer or two on their way out to somewhere else.

The room, rented from the council, has other uses during the day, such as for yoga, so it has to be cleaned and the bar has to be put up and dismantled every evening. It sounds like a lot of work.

‘It’s tiring, yeah,’ says Nick. ‘The first few weeks, we all felt we’d been run over by a bus. We’d wake up the next morning and think: ‘I can’t do that again’. ‘Has it got any easier?’ ‘Yes, because we all know what we’re doing now.’

Staff are paid the London living wage (considerably better than the statutory national living wage). A couple of team members are on training programmes and Nick and Will are still volunteers. They have set themselves a target that, as turnover increases, they too will be paid the London living wage.

Sales have been very good. ‘The future is looking bright,’ says Nick with a smile.

Super-reliable workers

Clearly one of the secrets of success is the team itself. Nick says the team members are ‘super reliable’. He adds that he has worked in all kinds of teams but the great thing about this one is that ‘everyone does what they say they will do’.

He wants to make it clear that employing people with learning disabilities has not been hard at all: ‘I think we’ve shown what people can do without very much effort. Every single challenge we have set our team, they have risen to. The hard bit has been the administration that comes with a brewery. There’s a lot of paperwork; there are a lot of rules you have to follow. But the team … it’s easy.’

Some people have asked when team members move on but it is a proper job and Nick seems a bit scandalised by the thought of poaching: ‘Would you say that to any other successful company? No you wouldn’t.’

I ask him if he can sum up what in particular he feels people with learning disabilities contribute. ‘They make great beer,’ he says, smiling. Well, I’ll drink to that.

Team members’  forenames have been used by request of the brewery

Sean Kelly was chief executive of the Elfrida Society from 2001 to 2012 and is now a freelance writer and photographer   Sean Kelly/www.seankellyphotos.com

If you don’t subscribe but would like to support us, every small donation helps us continue our work. No donation too small. You can make this for no charge at Paypal Giving using a debit or credit card.  DONATION 

If you shop on line, why not join our supporters at easy fundraising. Costs you nothing but every purchase makes a small charitable donation to us. https://www.easyfundraising.org.uk/causes/clinitiatives/

More stories about:

When being poor seems inevitable

Community Living 

Community Living

— Spring 2019

Austerity

When being poor seems inevitable

As a volunteer advocate, Neil Carpenter was struck that people with learning disabilities endured financial hardship as a matter of course, so decided to investigate. Through the experiences of five men, he tells stories of routine poverty and injustice wrought by austerity

Since 2010, successive governments have made it a priority to ‘clear up the financial mess left by Labour’ through a wide-ranging programme of austerity measures intended to reduce the deficit.

As those cuts were biting, I began working as a volunteer advocate for adults with a learning disability, going into day centres, running a drop-in advocacy session and visiting people in their homes.

My book, Austerity’s Victims, published last year, is based on that experience and was triggered by my initial impression that nearly everyone I met seemed poor – as if poverty was an almost inevitable part of having a learning disability.

I wanted to see if that impression of poverty was accurate. The book is a detailed account of what emerged and aims to bring the injustice experienced by people with a learning disability into the open.

It concentrates on five men in Cornwall – Mark, Les, Thomas, Danny and Frank (all names have been changed) – all of whom are different in a number of ways.

Bitter at life

The men’s ages range from below 30 to over 60. Mark is in his late 20s and his life, particularly his accommodation, lacks any planned stability. Les, nearing pension age, was born with brain damage and is often bitter at what life has brought him. To use his own words: ‘I didn’t ask to be bloody born like this.’

Family support for them varies from nothing to the comprehensive back-up received by Thomas who has Down’s syndrome. In his early 40s, he lives on his own but his parents provide strong support which is a key factor in the quality of life he enjoys.

Danny suffered a life-changing brain injury in 1980 in a motorbike accident but has managed to piece his life together again; he is included in the book because day centres and advocacy organisations make no major distinction between people with acquired brain injury and those with learning disabilities.

Mark and Danny attend a day centre while the others receive support at home. One of them is Frank: autistic and very unobtrusive, he withdraws into near-invisibility in his neighbourhood.

Low income gets lower

In these five case studies, the men’s spending is compared not just with UK and Cornwall medians but also with the Joseph Rowntree Foundation’s minimum income standard. This is ‘what you need in order to have the opportunities and choices necessary to participate in society’ or, more bluntly, ‘a minimum is about more than survival alone’.

” The world does not feel on his side, with each year – or each month – tearing a new hole in the fabric of support”

The men’s spending averages 48% of the UK median, 55% of the Cornwall median and 71% of the minimum income standard. It goes without saying that their income is below the relative poverty threshold.

From the case studies, additional common features stand out.

All the men have had their support hours at home or their day centre attendance cut. The three who have support hours have seen them reduced by an average of 27%. Only half of Mark’s day centre place is now funded; Danny has had all his adult social care funding taken away.

When the book was published, two of the five men had had their benefits cut. Frank could not get his disability living allowance transferred to a personal independence payment. Danny was suddenly deemed, 36 years after his motorbike accident, to have miraculously changed and therefore be fit for work without his employment and support allowance (ESA). Thomas has also fallen foul of the system by being moved to the work-related activity group.

To state the obvious, their quality of life has suffered. With limited opportunity to go out and mix with others, they lack the friendships that most of us take for granted. Loneliness is a real problem; as Les says time and time again: ‘It’s the evenings I can’t stand.’

Truro: areas of Cornwall appear prosperous and thriving but many people with learning disabilities are socially excluded

Poor wellbeing

All five men fall a long way short of experiencing the ‘wellbeing’ the 2014 Care Act says they should have.

One component of wellbeing is ‘personal dignity’. In the chapter on Danny and his work capability assessment, his tears at the initial outcome showed how little ‘respect’ (another word from the Care Act) he was given. ‘Personal dignity’ doesn’t even come into it.

Why is their wellbeing so poor? One reason is a failure to look at each individual holistically – as the Care Act recommends.

As well as the decline in the value of their benefits and the reductions in support that all the men experienced, there are many other elements in the cumulative impact of austerity revealed in the book: the loss of a befriender that Les suffered; a reduction in advocacy services, partly because fewer referrals were being accepted on an ‘open door’ basis and because of council cuts; the loss of free art classes that Les had attended; fewer social workers; and the loss of opportunities to take up paid employment.

Individually, each change or cutback mentioned above is significant; as a whole, their impact is profound.

For someone like Les, the surrounding world does not feel on his side, with each year – sometimes each month – tearing a new hole in the fabric of support.

Looking ahead

The impact on carers and parents is equally profound. For them, there are of course the day-to-day issues to contend with. Then, looming even larger – especially for parents whose lives have been dominated by repeated reviews and assessments – is a fear of the future: what will happen to their sons or daughters when they are gone and no one is left to speak up for them?

The future, when conditions will not magically improve with age, seems like a minefield with no one to act as a guide.

“The Department for Work and Pensions creates hurdles that

appear designed to trip people up”

 What to do

What should be done to address these many problems? Some steps are obvious: reverse government cuts to council funding; carry out a cumulative impact assessment of the effects of austerity on people with a learning disability; lift them out of relative poverty by raising benefit levels; and take a holistic approach to each individual.

In particular, change is needed at the Department for Work and Pensions (DWP). It creates a series of hurdles that appear designed to trip people with a learning disability up, particularly if there is no back-up from family, a support worker or an advocate.

These include: an initial phone call to request an application form that may not be completed successfully because of the number of options to negotiate and a frequently long wait in a queue; completion of the form itself (33 pages for personal independence payment); attendance at a work capability or PIP assessment interview; and, finally, in many cases requesting mandatory reconsideration of a decision Ð and sometimes taking an appeal to a tribunal.

Looking out: a lack of money prevents people with learning disabilities from going out and taking part in normal social life, which makes it difficult to forge friendships

Ground down

The attritional nature of the DWP’s procedure, grinding down those on benefits, also needs to change. Someone may be fortunate enough to clear the hurdles necessary for ESA or PIP, only to be told in the decision letter that he or she will have to go through the same process again, often in three years’ time.

People’s circumstances can improve but not as a rule if they have life-long conditions or an acquired brain injury. One of the men had to take an appeal all the way to a tribunal on two separate occasions, years apart. Nothing appeared to be learned from the first tribunal; it should have prevented the whole process being repeated.

An essential first step towards ending this attrition would be the introduction of lifelong benefits for lifelong conditions.

If these conditions were accurately defined, not only would unnecessary reassessments be ended for many but also the stress for parents and their concern for the future would be greatly eased.

Above all, public awareness of what is happening to people with a learning disability needs to be raised. My book, hopefully, can contribute to this.

While it aims to provide already well-informed readers with invaluable evidence in the fight against this injustice, it has a second audience in mind: those who know nothing about living with a learning disability and whose eyes should be opened by what they read.

So far, the impact on that second audience has been striking, with ‘I’m ashamed to live in a country that treats people like this’ being a typical reaction. That awareness, that shame, is what we need to spread.

Neil Carpenter is a former lecturer and teacher who worked in retirement as a volunteer advocate for adults with a learning disability. Austerity’s Victims is based on that experience.

Austerity’s Victims by Neil Carpenter is available on Amazon. Print: £6.57 (cost price): www.amazon.co.uk/dp/1984977601; Kindle, 99p: www.amazon.co.uk/dp/B07D3PVC8G

A review of Austerity’s Victims will appear in the next issue of Community Living

If you don’t subscribe but appreciate our open articles and would like to support us, every small donation helps us continue our work. No donation too small.

You can make this for no charge at Paypal Giving using a debit or credit card.  DONATION 

If you shop on line, why not join our supporters at easy fundraising. Costs you nothing but every purchase makes a small charitable donation to us. https://www.easyfundraising.org.uk/causes/clinitiatives/

More stories about:

Stories show the way to stay home

Community Living 

Community Living

— Spring 2019

Transforming Care

Stories show the way to stay home

Transforming Care has struggled to ensure people get local support so they can remain in their home area, and many have been moved miles away. Sue Ledger describes how life stories reveal what makes staying put possible – and what puts people at risk of being sent away

People with learning disabilities or autism who have complex needs are continuing to follow a well-trodden path out of their home area to receive services. Often, they do not return.

What is happening to many of these children and adults under the Transforming Care programme can be seen as part of a bigger problem of local support.

A clear gap persists between policy commitment (Department of Health, 2007a) to support all people to remain in their local authority district if they wish to do so and a continued reliance on out-of-area services.

Making local support a reality for all who need it is a longstanding problem. Many people continue to receive support at a considerable distance from their home area but are not moving away through choice.

The most commonly cited reason for making placements at a distance is a lack of local specialist provision, with these arrangements often made in response to a crisis when local support breaks down.

Yet many people, including those with complex disabilities, do remain in their communities.

Although much research has been undertaken on community-based care, there are few accounts of local support told by people with learning disabilities to guide practice. Life stories from people with high support needs, who are at the greatest risk of being place out of area, are noticeably absent.

Atkinson and Walmsley (2010) argue that insider accounts from people with learning disabilities and other under-researched groups, such as families and frontline staff, shed light on areas of social care where gaps exist between policy and practice, as is the case with local support.

Working with people with learning disabilities and those closely involved in their support to disclose previously unheard local life stories may increase the understanding of what, in practice, enables people to remain in their community.

My PhD project, Staying Local, set out to explore this possibility (2012). The research for this consisted of three main strands:

NIne men and women with learning disabilities (including five with high support needs) shared life stories using mobile interviews (people are driven around and talk about places they know, and this is filmed), map-making (making a map of their lives in their community) and photovoice (people photograph scenes then discuss what these places mean to them)

Interviews with 36 people closely involved in local support, including families, advocates, frontline staff and managers

Archival research, including into local policy and service documents.

The research analysed the stories of people who lived in their local authority district between 1971 and 2007. A follow-up review was undertaken in 2018 to establish how many people had remained in their home area.

In the densely populated urban setting where the project took place, 46% were placed out of area, 66% of whom had high support needs.

” Hearing local life stories may increase the understanding of what enables people to remain in their community”

Exploring crisis periods

As many people are placed out of area because of a crisis, the project used critical incident analysis to explore crisis or critical periods when people were at risk of such placements.

People with learning disabilities and those in their support circles (mainly friends, family and volunteers) were asked about when things had changed suddenly or been especially difficult. Once the research was under way, identification of critical periods emerged naturally.

Within eight of the nine life stories, there was one period; one story teller, who had complex epilepsy, described two.

Lenny Brown’s brother explained:

‘The worst time for us was the year before mum died, you remember, Len? Lenny and mum were at home and we couldn’t manage to look after both of them.’

Mobile interviews proved particularly helpful in supporting people to share information about critical periods.

Sally ‘had fall. Hurt neck’ [outside former group home – pointed to upper floor of building].

The person, their family or other key informant confirmed a crisis raised the risk of being moved out of an area.

Billy Green lived with his mother. After she died, plans were made for him to move him out of area. He is blind and was described at the time as having ‘very challenging behaviour’.

The manager of a short break service explained:

‘Before the meeting [planning meeting where a local solution was discussed], it seemed as though it simply wasn’t possible for Billy to return to his mother’s house. A decision had been reached that he would be moving out of area on the grounds that nothing affordable and specialist was available locally.’

Green succeeded to the tenancy of his mother’s home and has held it for several years. In 2018, he was still living there.

The nine life stories showed that, in every case, people were able to stay in their area initially because of care provided by families. Many of these families had their own informal support networks of extended family, other parents and friends.

Critical periods were triggered by Illness or the death of a family carer, a sudden increase in support needs (related to behavioural support, or physical or mental health) or the person wanting to leave their family home to gain independence.

Three services for local life

Within each local authority, services evolve differently and this influences the number of people who remain local.

Acknowledging this, the project made a series of maps documenting the growth of local support. These enabled life stories to be cross-referenced to how the infrastructure of services and resources developed.

Life stories highlighted three services that played a key role in enabling people to remain local:

  • Short breaks and crisis support
  • Family visiting and home support service
  • A flexible supported living service providing personalised support teams for individuals in their own homes.
  • However, these services alone were insufficient to keep everyone local. Additional factors were:
  • Longstanding and trusted relationships between people with learning disabilities, families and staff providing local services
  • Staff who worked effectively across boundaries, were confident about supporting people with complex needs and prepared to go the extra mile
  • Allies in services who saw the person as ‘belonging locally’ and worked to implement temporary arrangements until a longer-term solution was found
  • Staff able to spend time supporting families in addition to the person with learning disabilities
  • Effective person-centred leadership from managers who knew the individuals.
  • When people experienced critical periods, life stories revealed how staff and services worked closely with families, crossing multiple service boundaries to develop interim and longer-term local solutions. Oral and documentary sources indicated that knowledge of an individual’s local connections played a significant part in motivating staff to work so the person could remain in the area.
  • In 2018, eight of the life story tellers had remained local. Support for one person with complex needs was under funding review and their future uncertain. One had moved out of area because their physical health had declined and no local resources could meet their needs.
  • The project enabled people with learning disabilities and others closely involved in their support to share detailed accounts of how staying local was made possible in practice.

Webs of support

Life stories showed the value of people with learning disabilities, families and staff working together to build local webs of support that could sustain people, including those with the most complex needs, in a crisis.

Life stories also revealed barriers to belonging that persisted even though people remained local. The knowledge and skills needed to deliver effective local support are increasingly widely available. Life stories recorded through this project contribute to this literature.

Jim Mansell (DH, 2007b) identified that services providing competent local support are successful in a number of ways.

First, they recognise that people need their support to be well coordinated, so they tend to work across organisational boundaries, trying to build packages of care that meet individual needs, rather than matching people to existing services.

Second, they stick with people in spite of the difficulties in meeting their needs.

Finally, packages of care are based on thoroughly knowing the individual and their family.

Findings from the Staying Local project support this.

While it is encouraging that the majority of life story tellers in this project stayed close to home, the fact that some people with learning disabilities are at risk of being placed out of area, not through personal choice but as a result of service responses, is of serious concern.

Investment in the development of local support for all those who want it must be justified. The relates to enabling people to maintain relationships with the people and places that matter most in their lives; it also addresses the ethics of placing children, young people and adults away from their families and familiar environments through no choice of their own.

  • Names and places have been changed to protect confidentiality
  • Staying Local by Sue Ledger was chosen by representatives of the National Forum of People with Learning Disabilities, National Families Forum and Think Local Act Personal/Association of Directors of Social Services /Local Government Association as an example of good practice to guide national delivery of the Transforming Care Programme.

References and biography

  • Atkinson D, Walmsley J (2010) History from the inside: towards an inclusive history of intellectual disability. Scandinavian Journal of Disability Research; 2010; 12(4):273Ð86
  • Department of Health (2007a) Valuing People Now: From Progress to Transformation. London: the Stationery Office
  • Department of Health (2007b) Services for People With Learning Disabilities and Challenging Behaviour or Mental Health Needs: Revised Edition. Mansell Report. London: DH
  • Ledger S (2012) Staying Local: Support for People with Learning Difficulties from inner London 1971-2007. Unpublished PhD thesis: Milton Keynes: Open University
  • Lenehan C (2017) These are our Children. London: Council for Disabled Children
  • Brown M, James E, Hatton C (2017) A Trade in People. Lancaster: Centre for Disability Research
  • National Institute for Health and Care Excellence (2015) Challenging Behaviour and Learning Disabilities: Prevention and Interventions for People with Learning Disabilities whose Behaviour Challenges. London: NICE. www.nice.org.uk/ng11
  • If you don’t subscribe but would like to support us, every small donation helps us continue our work. No donation too small. You can make this for no charge at Paypal Giving using a debit or credit card.  DONATION If you shop on line, why not join our supporters at easy fundraising. Costs you nothing but every purchase makes a small charitable donation to us. https://www.easyfundraising.org.uk/causes/clinitiatives/

More stories about:

The sorry failure of an ambitious plan

Community Living 

Community Living

— Spring 2019

Transforming Care

The sorry failure of an ambitious plan

Transforming Care pledged to replace half of inpatient places with support in the community. Despite confident projections, numbers are little changed and scandals about assessment and treatment units continue. How did good intentions go wrong? asks Simon Jarrett

  Reinventing the asylum? Matthew Garnett’s detention and treatment in St Andrew’s Hospital (in the former Northampton Pauper Lunatic Asylum) was raised in a Channel 4 Dispatches documentary in 2017

Transforming Care came to an end in March 2019. It ended quietly, in contrast to the fanfare when its national plan in late 2015 promised to close hundreds of hospital beds for people with learning disabilities by improving community services.

The plan – Building the Right Support (NHS England, 2015) – predicted that up to half of national inpatient provision would have closed by 2019, with alternative care provided in the community. In three years, the document predicted confidently, we would expect to need hospital care for as few as 1,300 people instead of the current 2,600. Savings from this transformation would be reinvested into community services, following upfront investment.

The reality has been very different. As Community Living was going to press, the latest data available from the programme, for the end of January 2019, showed that 2,305 inpatients with learning disabilities and/or autism were in hospital. The majority – 1,325 (58%) – had been in hospital for more than two years. Almost half had gone six months without a review (NHS Digital, 2019a).

During January, 150 people were discharged but, of these, only 100 moved back into the community rather than into other so-called ‘specialist’ settings. In the same month, 100 new admissions took place. In other words, the numbers hardly shifted, even as the Transforming Care programme approached its close, when an acceleration might have been expected (NHS Digital, 2019a).

According to these figures, the number of people needing hospital care has fallen by just under 12% from 2,600 in late 2015 to 2,305 in early 2019. Not all of those 12% have returned to their communities by any means.

The forecast reductions of 50% seem to have been at best a triumph of optimism or at worst a fantasy.

If we look at the wider picture, things appear even more grim.

As well as providing data on Transforming Care itself, NHS England produces something called the Mental Health Services Data Set. This shows the numbers of people with a learning disability and/or autism in ‘NHS funded secondary mental health, learning disability and autism services in England’. This has a wider scope than the Transforming Care statistics and includes, for example, care commissioned in England but provided elsewhere in the UK.

The latest available statistics, from November 2018, show 3,670 people with learning disabilities and/or autistic spectrum disorders were in hospital, of whom 1,355 have been in hospital for more than two years (NHS Digital, 2019b).

The barrage of statistics can appear daunting, but the message from them is clear Ð little, if anything, has changed, let alone transformed.

Sadly, the 3,000 Lives Campaign, which called to move the 3,000 people with learning disabilities out of institutional care and has been championed by this magazine for a number of years, has no need to change its name to the 1,000 or even the 2,000 Lives Campaign.

Growing institutionalisation

Indeed, a shocking series of press and television exposees have suggested that the problems of institutionalisation in health settings have become even worse.

Last October, The Times (Ford, 2018a) reported that ‘hundreds of people with autism are being locked up in poor conditions, abused and left in small, secluded padded cells’.

Liberal Democrat MP Norman Lamb intervened in the case of a 15-year-old girl in an assessment and treatment unit (ATU) who was regularly restrained. Lamb said that ‘she behaved like an animal because she was treated like one, but from the moment she left, she never needed to be restrained again’ (Ford, 2018a).

The following month, the same newspaper reported on the case of 17-year-old Bethany, a patient at St Andrew’s Hospital in Northamptonshire, who was secluded for months in a bare room, with food passed to her through a hatch. The cost of her ‘care’ was more than £13,000 per week. (Hurst and Greenwood, 2018).

A further Times report in December noted that the number of people with autism detained in psychiatric hospitals had actually risen from 1,100 in 2015, when the pledge to reduce the number by half was made, to 1,180 in 2018 (Hurst, 2018).

The parliamentary Joint Select Committee on Human Rights were so alarmed by what they discovered about poor treatment in ATUs that they wrote to the secretary of state for health and social care demanding action. They reported that between 2016 and 2017 the number of recorded restraints increased by 50%, and the number of recorded isolations by 40% (Joint Select Committee on Human Rights, 2018).

Journalist Ian Birrell has written numerous articles highlighting the injustices and abuses of the system of detention of people with learning disabilities. He says these incidents are not isolated but arise from systemic failure.

It is shocking to read his words, in a Daily Mail article in December 2018: ‘I have interviewed abused women, bereaved parents, torture victims and girls in the captivity of jihadis. I have seen fields strewn with dead bodies, hospitals flooded with ebola victims and towns crushed by aerial bombing. But nothing has felt so traumatic as my investigation for this newspaper of people with autism and learning disabilities being locked up in cruel and destructive conditions across Britain’ (Birrell, 2018a).

All this shows a deeply disturbing catalogue of abuse, human rights violations and callous disregard for the humanity of people with learning disabilities.

Against this background and data, Transforming Care cannot lay claim to any success.

So why has Transforming Care failed to transform, and why are we instead faced, alarmingly, with a deteriorating rather than an improving situation?

Intention versus reality

The original aim of the programme was laudably simple: ‘Transforming care is all about improving health and care services so that more people can live in the community, with the right support, and close to home.’

The plans were clear: £100 million would be invested in new community housing to facilitate hospital discharge. Three new models of local service would be introduced across the country – ‘enhanced intensive support’ in people’s own homes, community-based forensic support to divert people from the criminal justice system and secure hospitals, and a network of local acute admission services focused on rapid assessment, rehabilitation and reintegration.

As a result of these initiatives, hospital numbers would drop and the money saved would be transferred to rebuild community services. This would create a virtuous circle of ever-improving community services leading to ever-reducing demand for inpatient detention.

No one is denying the good intentions of the plan or those who worked on it. However, despite its commitment to working with stakeholders, it has always felt like an old-fashioned, top-down, command-and-control NHS initiative. Monthly micromanagement of commissioners, relentless demands for data and the imposition of a one size fits all service model have led to a concentration on process and a defensive mindset among commissioners, where creativity and local improvisation around complex problems have been stifled.

 The national plan: despite intentions to provide community care, service users have been moved into high-cost specialist units, often far from home and with no better values than inpatient care

At times, the whole initiative has been counterproductive. Commissioners have placed people into extremely expensive ‘specialist’ provision in the private and voluntary sectors, often far from their homes, and often with no better values than the inpatient facilities from which they have been moved. Technically, this counts as success in moving people off the Transforming Care books, despite achieving no improvement in a person’s situation.

In addition, this can drain funds from the system rather than release cash for community services. While it is easy to blame all difficulties on austerity – which has dramatically cut the kind of preventive community services that Transforming Care requires – support for people with learning disabilities suffers not so much from a lack of resources as from a grotesque misallocation of them.

Whiff of corruption

As Birrell has eloquently put it, and as we have argued tirelessly in this magazine, ‘there is a whiff of corruption emerging from this system as rapacious private firms muscle in on the system, raking off vast profits while having the power to determine if people can escape their clutches. Multinationals, hedge funds and private equity groups are buying up psychiatric units holding these people and opening new centres’ (Birrell, 2018b). It should, however, also be noted that St Andrew’s Healthcare – which has often found itself at the heart of many of these concerns – is a registered charity.

A dangerous vacuum of provision has been created by a combination of weakly implemented policy, inattention from the government (and the opposition) and fragmentation and disarray across social care. Into this space have stepped powerful companies working to a medical model, backed up by psychiatrists reasserting the old claim that medical authority alone should determine how people with learning disabilities are treated.

Against such interests, the Transforming Care programme has been flattened like a hedgehog trying to cross a motorway.

” Support suffers not so much from a lack of resources as from a grotesque misallocation

of them”

It was perhaps always too much to ask the NHS to understand that the medical model is not right for people with learning disabilities. Wonderful as is the work of the NHS in other areas, it has never had an easy relationship with learning disability.

The successful deinstitutionalisation of the 1980s and 1990s was led by a genuine alliance committed to the social model. We need to do this again to defeat this new set of monstrous institutional injustices.

The Transforming Care programme will be rolled out in some new form or other, but no one should hold their breath if they want to see transformation. It’s time to take the fight against arrogant medical authority and rapacious profit-seeking companies into another arena.

Simon Jarrett is the editor of Community Living

If you don’t subscribe but appreciate our open articles we’d always appreciate a small donation which you can make for no charge at Paypal Giving using a debit or credit card.  DONATION 

No donation too small – it all helps our charity to keep speaking out.

 References

 Birrell I (2018a) I have seen so many horrors, but this is barbarism. Daily Mail; 22 December. http://tinyurl.com/y5ap3ako

Birrell I (2018b) Young people are being locked away for years because they have autism and learning disabilities. Some never make it out. iNews. http://tinyurl.com/y575qt8h

Ford R (2018a) Autistic teenagers ‘locked in padded cells and abused’. The Times; 29 October

Hurst G (2018) Psychiatric units holding more autistic people. The Times; 6 December

Hurst G, Greenwood G (2018) Taxpayer-funded psychiatric care offers healthy return for investors. The Times; 5 November

Joint Select Committee on Human Rights (2018) Learning Disabilities And Autism: Stronger Human Rights Protection In Atus? 5 December. http://tinyurl.com/y5bnyzdq

NHS Digital. Learning Disability Services Monthly Statistics – Provisional Statistics (AT: January 2019, MHSDS: November 2018 Final). 2019a; 21 February. http://tinyurl.com/y36uqbot

NHS Digital (2019b) Mental Health Services Monthly Statistics – Final November, Provisional December 2018. http://tinyurl.com/y25pepvr

NHS England (2015) Building the Right Support. www.england.nhs.uk/learning-disabilities/care/

More stories about:

Simon Jarrett: Editor’s blog – April 2019: The malaise that lies below

Simon Jarrett 

Simon Jarrett

— Spring 2019

Simon-Jarrett Editor’s blog – April 2019

Simon Jarrett gives a preview of some of what you will find in our current issue

The malaise that lies below Transforming Care

The Transforming Care programme has come to an end in a rather quiet, shamefaced way. As our article in our current April 2019 issue (The sorry failure of an ambitious plan) highlights, it has had only a small impact. The programme made big promises, back in 2015, that it would make significant inroads into the scandalous numbers of people with learning disabilities detained in ‘assessment and treatment’ centres and other ‘specialised’ health settings. Often these people are detained far from home and family in unsympathetic, to say the least, clinical environments.  Too frequently they find themselves in a nightmarish Catch-22 world where they are detained because of their ‘behaviours’. and yet their treatment serves only to reinforce and worsen those behaviours, thereby justifying further detention.

There has only been a small dent in the numbers detained under these scandalous circumstances. There are still well over 2,000 people waiting for their care to be transformed, just as there were three years ago, despite all the investment and initiatives. The majority of them have been detained for over two years. As numerous press and television exposés have shown, Individuals and families continue to suffer what is nothing less than persistent, gross abuses of human rights. The public cannot claim that they do not know.

Whatever the faults that characterise the way in which the programme was structured and implemented, a deeper malaise lies beneath it. A careless government has allowed a group of complex people to become commodified, human cash-cows bringing in enormous fees – sometimes more than £500,000 a year – for highly leveraged private companies who milk profit from the system. Shamefully, some supposedly non-profit organisations do the same. It is in their interests to detain such people for as long as possible, preferably indefinitely, to boost their business model. This is a human, moral, and financial scandal, and Transforming Care has not laid it to rest. At its heart lie ruined, wasted lives, abusive systems of care and a gross abuse of public funds, as Simon Duffy so brilliantly highlights in his column. (Ending institutional abuse scandals)

As Sue Ledger’s article on ‘Staying Local’ shows (Stories show the way to stay home), there is another way. People can be diverted from this abusive system, and lead fulfilled lives in their communities. It is not easy – these can be people who have complex needs and require intensive support. To make this work locally, outside the institution, requires imagination, flexibility, innovation and, most of all, understanding and respect for each individual concerned, coupled with a belief in their right and ability to lead a full human life. It also requires money – but a fraction of what is poured into the medicalised system that currently ruins people’s lives. Transforming Care is over. The fight goes on.

Good cheer

Our interview by Sean Kelly with the founder and staff of Ignition Brewery in London (Success in a bottle) shows what happens when somebody looks at an old situation with a new eye. Nick O’Shea, an economist, met a group of people with learning disabilities and was shocked to see that while they all wanted to work, and all appeared to be employable, none of them were employed. As an economist he knew that brewing is an area in which start-up businesses can thrive, and is also labour-intensive with a range of skills suitable for a diverse workforce. The result? A successful small brewery and a bar, employing mostly people with learning disabilities.

As the experience of the Transforming Care programme shows, top-down plans devised by large bureaucracies will fail if they stifle innovation, imagination and vision, and crush independent thought. Fortunately, there are people, like Nick O’Shea, who see things differently. In the world of Ignition Brewery beer is a commodity, people with learning disabilities are not. That is called seeing things the right way round,

Simon Jarrett Editor

If you don’t subscribe but would like to support us, every small donation helps us continue our work. No donation too small. You can make this for no charge at Paypal Giving using a debit or credit card.  DONATION 

If you shop on line, why not join our supporters at easy fundraising. Costs you nothing but every purchase makes a small charitable donation to us. https://www.easyfundraising.org.uk/causes/clinitiatives/

 

More stories about:

Oska Bright film festival 2019

Community Living 

Community Living

— Winter 2019

If you missed entering, don’t miss the festival – an amazing and unique showing of great talent, and another wodnerful initiative. It’s taking place in Brighton on 23 – 26th October. see below

Oska Bright, the world’s leading learning disability film festival is open for submissions to its 2019 Festival. It has been looking for exciting and bold films by, or featuring in lead roles, people with learning disabilities, autism or additional needs. The deadline to submit your film was 30 March. To enter your film and find out more visit: http://bit.ly/OBFFcallout

They want short films made by, or featuring people with a learning disability, autism or additional needs – whether including animation, a documentary, drama, experimental, music or artist film. Don’t delay – enter your film or one you’re filming right now!! Good luck.

.

More stories about:

Moments in history; ‘There she goes’ and Asperges book reviews

Community Living 

Community Living

— Winter 2019

Interested in history – you’ll enjoy our Asperges book review telling us some surprising facts about the man and the origins of the term.https://www.cl-initiatives.co.uk/aspergers-nazi-past/

Moments in History tell us about the mass sterilisation episode in US history,

https://www.cl-initiatives.co.uk/three-generations-imbeciles-enough/

whilst more up-to-date the TV drama ‘There she goes’ is reviewed and looks at how realistic it may be to the experience of families…https://www.cl-initiatives.co.uk/telling-it-like-it-is/

Do have a look at these our regular features – TV and Book Reviews and Moments in History -and if you enjoy these you may like to subscribe – see link https://www.cl-initiatives.co.uk/members/subscription/

More stories about:

Letters

Community Living 

Community Living

— Winter 2019


Emotional wellbeing and mental health needs are severely neglected

My sister, who is 54 years old and has learning disabilities, has had a serious mental health crisis over the past six months. This resulted from a threat to remove sleep-in staff in the supported service in which she lives.

I’ve decided to share her experiences because they highlight serious shortcomings in how the emotional wellbeing and mental health needs of people with learning disabilities are considered.

The decision to remove sleep-in staff appears to be related to the court ruling from 2017 that care workers should be paid the national minimum wage for every hour of a sleep-in shift rather than a flat rate (although the court of appeal overruled this in July 2018).

A year ago, my sister was told sleep-in staff were going to be withdrawn from the service where she has lived for 11 years. As a result, she became very distressed.

I found out about this only accidentally because I had happened to visit on a particular day.

Despite reassurance and support, my sister’s distress continued. She was given a telecare alarm button system as an alternative to sleep-in staff, which she is unable to use because she is deaf.

From the beginning of 2018, I noticed a gradual change in my sister’s usual outgoing nature and, by May, her mental health took a serious turn for the worse.

She was admitted to the local general hospital to check for physical causes. While there, she went through an acute mental health crisis and, as a family, we were told she could not return home because care staff could not manage her behaviour.

She was abandoned by social care services, so we were left to support her while trying to access some specialist help.

Eventually, because of the degree of her mental health crisis, she was sectioned and diagnosed with post traumatic stress disorder, anxiety and depression. As I write, she has spent five months on the ward, during which time she has repeatedly told us she wants ‘to go home’.

The psychiatrist has proposed using section 17 leave for her to return to her home, in the hope her recovery will be hastened once she is back in a familiar environment. I’m waiting for funding to be approved to enable her return.

These experiences demonstrate how crucial it is to prioritise the emotional wellbeing and mental health needs of people with learning disabilities.

I believe my sister’s crisis could have been avoided had our concerns about the impact of this change on her mental health been taken seriously.

Jane Lloyd Lancashire

Reading our son’s football article was thrilling for the whole family

We just wanted to let you know how thrilled our son Matthew was to see his article in print in the last issue (‘Freedom kicks off’, autumn issue, page 18).

It was fantastic for us as parents too – it was ‘so Matthew’ and it felt like we could hear him saying the words as we read it.

Thank you so much for letting his voice be heard once again.

Isabelle and Robin Garnett London

 

More stories about:

Simon Jarrett: Editor’s comment blog: Welfare turns into warfare against unlikely enemies of the state

Simon Jarrett 

Simon Jarrett

— Winter 2019

Simon-JarrettWelfare turns into warfare against unlikely enemies of the state

Over the twentieth century there was a growing recognition that all citizens, at vulnerable times in their lives, should be entitled to support – when very young, old, sick, unemployed, or in poverty. This included those who would face challenges throughout their lives, because of some form of disability.

All this culminated in the Welfare State, planned by a Liberal, William Beveridge, enacted by the 1945 Labour government, and supported by the Conservative opposition. There was a consensus that a contract existed between the state and the people, without whose taxes and sacrifices the state would not exist. Support to the vulnerable was key to the contract.

The spirit of this contract, and those shared beliefs, is now at serious risk. In our January 2019 issue of Community Living three excellent but disturbing articles suggest that the state no longer sees itself as obliged to support its vulnerable citizens, but is rather on a mission to sever its obligations to them.

Sean Kelly interviews Jackie Downer,(LINK)  a woman who has devoted her life to advocating on behalf of her fellow citizens with learning disabilities, and has received an MBE for her work. The Department of Work and Pensions (DWP) sees her differently. She describes being driven to the very edge by their blundering attempts to transfer her to Universal Credit.

Charlie Callanan’s article on benefits (LINK) describes how over 10,000 carers face prosecution, fines or repayment orders from the DWP for overclaiming Carer’s Allowance. For the vast majority this has happened because they have been unaware they have lost their entitlement when their employment circumstances have changed.

Finally, Brian Collinge (LINK) explains the gross financial injustice brought about by the Minimum Income Guarantee, which enables local authorities to take all earnings above a certain level from people with disabilities to pay towards their care. Is this an accidental oversight, or a conscious and deliberate attack by Government on those least able to bear it and argue against it?

Put these stories together, and a picture emerges of bureaucratic persecution and hostility towards the most vulnerable and their families. When did carers and people with learning disabilities living in poverty become enemies of the state? The DWP, and the politicians who oversee it, must address the poisonous culture that infects their practice. They should feel shame for persecuting the people they are paid to protect, and focus instead on rebuilding the Welfare State contract. Their job is to protect, support and enable those most in need. They should not be at war with their own people.

 

Being noticed is a matter of life or death

The Music Man Project (LINK) which Natalie Bradford writes about in our January 2019 issue demonstrates yet again the amazing work being done in the performing arts by people with learning disabilities. Their performances at the Royal Albert Hall and the London Palladium are part of the emerging vibrant public face of learning disability. In a very different way the BBC drama series There she goes (LINK) is bringing to public attention the struggles that parents of a child with learning disabilities can face, managing to be both gruelling and humorous at the same time. In both cases people with learning disabilities are firmly in the public eye.

On a much darker note, the dangers of what happens when people slip from public view are apparent in two of our other articles. Following on from our recent features on the scandal of unmarked mass graves from former institutions, Jan Walmsley and Pamela Dale (LINK) explain why it is that these deaths happened, and continue to happen, in closed institutions. Hidden and forgotten about, people are literally at risk of their lives. Our review of Edith Shaffer’s book on Hans Asperger’s activities in Nazi Austria (LINK) shows how, given a conducive political atmosphere, death through neglect can slip with horrifying ease into systematic murder.

Being noticed, and cared about, is quite literally a matter of life or death.

 

More stories about:

Historic deaths, difficult questions

Community Living 

Community Living

— Winter 2019

Historic deaths, difficult questions

People with learning disabilities are more likely to die prematurely while in residential units, as was the case 100 years ago. Jan Walmsley and Pamela Dale ask if past institutional deaths, often recorded as ‘natural’, can shed light on today’s tragedies and the attitudes that can cause them

For more than 30 years, a key goal for both of us as historians has been to get closer to the lived experiences of people living with learning disabilities.

This fits with the increasingly person-centred services that gradually emerged from the closure of the long-stay institutions.

However, by concentrating on patients’ lives (Atkinson et al, 1997), we have perhaps missed the opportunity to consider their deaths and what they can tell us about care in the past. Our work exploring this topic was initially developed as a response to studies of deaths in 19thÊcentury mental health facilities. New research questions have been prompted by more recent events.

The campaigns described in the last two issues of Community Living (‘Forgotten lives commemorated’, autumn 2018, page 26; ‘Ignored and forgotten – in death as in life’, summer 2018, page 16) show that proper respect for the people buried in institutional graveyards is important. The way people are treated in death is often a vital clue to understanding the way they were treated (or mistreated) in life.

There is also a more sinister possibility we need to explore. With evidence that people using learning disability services today experience serious health inequalities and are at significant risk of premature death (Mencap, 2007; Michael, 2008; Emerson and Baines, 2010; University of Bristol; 2013; 2018), we have to ask difficult questions. Were any of the historic deaths we identified preventable? If they were, why were they assumed to be natural and not investigated as potentially suspicious? Is it possible that serious care failings were concealed? Were opportunities to protect other patients missed?

It was questions like these that underpinned the long campaign by Sara Ryan to reveal the truth about the death in 2013 of her 18-year-old son Connor Sparrowhawk (Ryan, 2017). A number of other disturbing cases were identified and, in a climate of heightened concern following events at Winterbourne View, the Care Quality Commission (CQC) decided to take the whole sector to task.

Two landmark CQC reports (2016a; 2016b) present premature deaths as both an indictment against complacent service providers and an important source of learning points for transforming care standards. This work provided a reference point for government-commissioned investigations into premature mortality conducted by the University of Bristol (2013; 2018). This official interest seems promising, although an apparent lack of urgency over implementation at a local or national level is a major concern.

When evaluating services, historians as well as practitioners need to be aware of the CQC’s worrying conclusion that ‘we found that the level of acceptance and sense of inevitability when people with a learning disability or mental illness die early is too common’ (CQC, 2016b: 2).

Just as service providers show reluctance to probe into either the nature or scale of premature deaths, so historians have been guilty of maintaining a strange silence on the subject.

While the past lives of people with learning disabilities are increasingly well documented, we still know surprisingly little about their deaths. This is not accidental. It reflects the orientation of the more influential institutional studies (Gladstone, 1996; Thomson, 1998; Wright 2001) and a reluctance on the part of institutional survivors to discuss a painful subject.

While historians have correctly identified the significant gap between the ideals of people who founded various Victorian and Edwardian asylums and the care provided, they have not pursued this discrepancy to consider questions of abuse and premature (and even sinister) deaths.

Historians of 20th century care have talked about resource scarcity and pressures on the institutions. However, there has been no appetite to dwell on specific abuses or even recount details about known scandals. Difficult issues have been minimised, with historians noting the checks and balances within the system that apparently protected UK patients from the types of sterilisation and euthanasia programmes operated by the Nazi regime in the 1930s and 1940s (Thomson, 1998).

Historical interest in the governance of institutions and the wider social, economic and political context in which they operated has generally excluded analysis of patient deaths (Thomson, 1998). This gap has not yet been filled by the work of advocacy and self-advocacy groups, which has concentrated on lived experiences and life stories (Atkinson et al, 1997; Mitchell et al, 2006).

This needs addressing. Much can be learnt from asylum historians who have made deaths central to their descriptions of patients’ lives and assessments of different clinical arrangements and governance regimes (Cherry, 2003). Although access to patient records is problematic for ethical reasons, there are sources to support investigations into deaths at local and national levels.

Death was an important topic for record keepers of 19th and 20th century asylums. It was common practice to compare monthly and annual totals and contrast death rates between facilities. This statistical analysis was often supplemented by detailed accounts of individual cases, including an assessment of the care received and praise or blame for particular staff.

Regarding mental health, historians have not only discussed deaths and death rates (Reaume, 2000) but also drawn attention to those that involved violence to the self and/or others and/or neglect by staff (Shepherd and Wright 2002; Shepherd, 2014).

Cover-ups?

We found examples of such cases among the records of the Royal Western Counties Institution, a long-stay hospital for people with learning disabilities at Starcross in Devon (held at Devon Heritage Centre).

Here, 172 patients (admitted from April 1914 to March 1939) died before the end of 1947. As non-clinicians, we can comment only briefly on the 160 or so deaths attributed to ‘natural causes’. Suspicious deaths resulted from a tractor accident, poisoning, drowning, and falls; all were deemed accidents, although some were investigated as possible suicides.

We discussed our preliminary findings with other researchers. Once prompted to consider institutional deaths, they provided testimony (based on oral histories as well as documents) relating to suspicious deaths at other facilities before and after the creation of the NHS.

Numbers of deaths suspicious enough to initiate an inquest were small. However, the total number of deaths from all causes was large. We argue historians should be first noting the fatalities – many of young people – and then asking serious questions about them.

Once we became alert to concerns about inpatient deaths, we realised there had been periodic official interest. Reports into Ely Hospital, Cardiff (HMSO 1969) flagged the issue up but drew few definite conclusions.

We suspect this gap in understanding owes more to a failure to ask questions than a genuine lack of evidence. Had Sara Ryan not pursued her son’s death with such energy, it too would have been recorded as being from ‘natural causes’, not the neglect verdict reached by the coroner.

It is time for historians to fill this gap and speak to the distinctly 21st century concern to explain and avoid premature and unnecessary deaths. We suspect far too many people have died without concern being registered and protections put in place to safeguard others.

This conclusion is not only an indictment against past services but shows a worrying, persisting legacy. Historians as well as practitioners and advocacy groups need to start to correct the neglect of this important topic.

Jan Walmsley is an independent researcher who specialises in projects related to the history of learning disabilities

Pamela Dale is an honorary fellow attached to the Centre for Medical History at the University of Exeter and a historian, who has written about institutional care

This is the last article in our three-part series on death and memorialisation in institutions

Atkinson D, Jackson M, Walmsley J (1997) Forgotten Lives: Exploring the History of Learning Disability. Kidderminster: BILD

Care Quality Commission (2016a) Southern Health NHS Foundation Trust. Quality Report. London: CQC

Care Quality Commission (2016b) Learning,Candour and Accountability. London CQC

Cherry S (2003) Mental Healthcare in Modern England: the Norfolk Lunatic Asylum/St Andrew’s Hospital, 1810-1998. Woodbridge: Boydell Press

Emerson E, Baines S (2010) Health Inequalities and People with Learning Disabilities in the UK. Learning Disability Observatory

Gladstone D (1996) The changing dynamic of institutional care: the Western Counties Idiot Asylum, 1864-1914. In: Wright D, Digby A, eds.

From Idiocy to Mental Deficiency: Historical Perspectives on People with Learning Disabilities. London: Routledge

HMSO (1969) Report of the Committee of Inquiry into Allegations of Ill-treatment of Patients and other Irregularities at the Ely Hospital, Cardiff

Mencap (2007) Death by Indifference: London: Mencap

Michael J (2008) Healthcare for All. London:Department of Health

Mitchell D, Traustadóttir R, Chapman R, Townson L, Ingham N, Ledger S, eds (2006) Exploring Experiences of Advocacy by People

with Learning Disabilities: Testimonies of Resistance. London: Jessica Kingsley

Reaume G (2000) Remembrance of Patients Past: Patient Life at the Toronto Hospital for the Insane, 1870-1940. Don Mills, Ontario:

Oxford University Press Canada

Ryan S (2017) Justice for LB. London: JKP

Shepherd A (2014) Institutionalizing the Insane in Nineteenth-Century England. London: Pickering and Chatto

Shepherd A, Wright D (2002) Madness, suicide and the Victorian asylum: attempted selfmurder in the age of non-restraint. Medical

History 46: 175-96

Thomson M (1998) The Problem of Mental Deficiency: Eugenics, Democracy, and Social Policy in Britain c1870-1959. Oxford:Clarendon Press

University of Bristol (2013) Confidential Inquiryinto Premature Deaths of People with Learning Disabilities (CIPOLD)

University of Bristol (2018) Confidential Inquiryinto Premature Deaths of People with Learning Disabilities (LeDeR)

Walmsley J, Welshman J (2006) Introduction. In: Community Care in Perspective: Care, Control and Citizenship. Basingstoke: Palgrave Macmillan

Wright D (2001) Mental Disability in Victorian England: the Earlswood Asylum 1847-1901. Oxford: Clarendon Press

More stories about:

‘Three generations of imbeciles are enough …’

Community Living 

Community Living

— Winter 2019

A judge’s decision in the 1920s to prevent the US from ‘being swamped with incompetence’

had far-reaching consequences, leading to tens of thousands of people being surgically

sterilised without their consent over the following decades, writes Simon Jarrett

Towards the end of the 19th century in the US, the costs of the huge institutionalisation programme for the so-called ‘feebleminded’ and ‘moron’ population began to be questioned. So too did its effectiveness.

The estimated number of ‘mentally retarded’ children in every state never seemed to stop growing and, despite a huge building programme, there were not enough places in institutions for all of them.

Furthermore, the early ideal that these institutions would become self- supporting through the produce of their farms and workshops proved to be a fiction. The cost of this mass incarceration to the American state began to be questioned.

The eugenics movement, which believed that populations needed to be controlled to prevent ‘inferior’ types, such as criminals and the ‘mentally retarded’ from ‘polluting the race’, began to advocate another solution – castration.

‘Morons’ would no longer have to be confined in expensive institutions if a cheap sterilisation operation could prevent them from producing children. They could then be allowed back into the community.

However, an early experiment with eugenic sterilisation, including castration, at the Kansas State Home for the Feebleminded in the 1890s caused a public outcry when 44 boys and 14 girls were mutilated.

There was no public desire to punish the feebleminded – most simply wanted them to disappear.

A boost for eugenics

When new surgical techniques for sexual sterilisation were developed at the end of the 19th century, this gave the eugenics movement a boost.

Vasectomy for men and salpingectomy (removal of fallopian tubes) for women seemed to offer relatively safe and painless methods of preventing the feebleminded and other ‘degenerates’ from having offspring.

The movement took off. In 1907, the state of Indiana enacted the first compulsory sterilisation statute, aimed at ‘confirmed criminals, idiots, rapists and imbeciles’. Fifteen other states passed similar laws over the next decade.

However, despite their claims that his was a humanitarian and harmless intervention, the early sterilisation laws were consistently struck down by the courts on the grounds of individual rights, or freedom from cruel and unusual punishment. Sterilisation programmes ground to a halt.

This all changed in 1927, when the United States Supreme Court upheld the state of Virginia’s eugenic sterilisation statute in a landmark case known as Buck v Bell.

In 1924, Carrie Buck, aged 17, had been committed by a court in Charlottesville, at the request of her foster parents, to the Virginia Colony for Epileptics and the Feebleminded. Three years earlier the same court had committed her mother, Emma Buck, to the same institution. Shortly after arriving, Carrie, who was pregnant and unmarried, gave birth to a daughter, Vivian. Officials sought to have Carrie sterilised.

Oliver Wendell Holmes: “It is better for all the world … if, society can prevent those who are manifestly unfit from continuing their kind”

The case worked its way through the lower courts and eventually reached the United States Supreme Court in April 1927. Here, Lord Justice Oliver Wendell Holmes delivered his famous – or notorious – verdict:

“We have seen more than once that the public welfare will call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the state for these lesser sacrifices, often not to be felt to be such by those concerned, in order to prevent our being swamped with incompetence.

“It is better for all the world, if instead of wanting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.

“The principle that sustains compulsory vaccination is broad enough to start cutting the fallopian tubes … three generations of imbeciles are enough.”

Holmes’s judgment in Buck v Bell, and his words ‘three generations of imbeciles are enough’ echoed down the ensuing decades. Programmes of involuntary sterilisation grew rapidly.

Between 1909 and 1928, an average of 448 people nationwide were surgically sterilised each year. By 1935, the annual figure had exceeded 3,000.

Ultimately, more than 20,000 people were sterilised in California alone. By the 1960s, when the practice was effectively (but not totally) ended, around 60,000 American citizens had been sterilised without their consent.

Further reading

James W Trent Jr (1994) Inventing the Feeble mind: a History of Mental Retardation in the United States. Berkeley: University of California Press

Edward J Larson (1995) Sex, Race and Science: Eugenics in the Deep South. Baltimore: Johns Hopkins University Press

Philip R Reilly (1991) The Surgical Solution: a History of Involuntary Sterilization in the United States. Baltimore: Johns Hopkins University Press

For an account of the lives of Carrie Buck, her mother Emma and her daughter Vivian, read Carrie Buck’s Daughter by Stephen Jay Gould, first published in Natural History magazine in July 1984. It is available at: https://faculty.uca.edu/benw/biol4415/papers/carriebuck.pdf

 

More stories about:

Asperger’s Nazi past

Community Living 

Community Living

— Winter 2019

Asperger’s Nazi past

Hans Asperger has been celebrated for his defence of children with disabilities but a study has concluded he assisted in the Nazi euthanasia programme. Michael Baron reviews it

Asperger’s Children: the Origins of Autism in Nazi Vienna Edith Sheffer

W Norton & Company, 2018, 317pp, £20 hardback

To read Edith Sheffer’s Asperger’s Children is a chilling experience. It is a hugely important work. The book confirms rumours that Hans Asperger participated (albeit at a careful distance) in the Nazi practice of killing disabled children during Austria’s occupation. The paediatrician’s signature is on orders to move learning disabled children from his Viennese clinic to Spiegelgrund, a nearby hospital where more than 400 children were murdered.

In addition to drawing on recently discovered documentation, Sheffer bases her argument on newly translated descriptions by Asperger of his young patients, which are imbued with Nazi eugenics philosophy and demonstrate a profound disgust for the most disabled children in his care.

Today we use colloquialisms such as ‘aspies’ in a positive way and give people the label of Asperger syndrome, even though it is no longer an official diagnostic term. For how much longer can this continue after Sheffer’s revelations?

“Asperger’s descriptions are imbued with Nazi eugenics and demonstrate a profound disgust for the most disabled children”

Lorna Wing, the eminent psychiatrist who originated the idea of autism as a spectrum condition, first suggested the term Asperger syndrome be used. In the early 1980s, she thought it would be a useful term for autistic children without intellectual disability whose parents found the term autism, with its association with a low IQ, stigmatising.

Over the decades, Asperger syndrome has become a badge of honour for those who argue that their form of ‘autism’ was not so much a disability but a difference that, with greater societal acceptance, could be an asset.

Professor Sheffer, herself a parent of an autistic child (which has led to some suggestion of bias by some critics) is by profession an academic historian of Germany. Her groundbreaking book is scrupulously researched and, for the most part, responsibly written.

Children with Down’s syndrome in Schönbrunn Sanatorium in Germany, 1934

Unfortunately, this book’s subtitle, The Origins of Autism In Nazi Vienna, is provocative and misleading. It is not the case that autism as it is known today originated with Asperger in Nazi Vienna rather than with Leo Kanner in Chicago. However, that criticism is probably best levelled at a publisher looking for an attention-grabbing subtitle rather than the book’s author.

It is more than 70 years since the defeat of Nazi Germany and here, finally, is a biography of a controversial subject that also serves as a primer on the worst excesses of Nazi eugenics.

Evidence comes to light

Only in recent years has evidence emerged from the Vienna archives of Asperger’s role in sending a number of learning disabled children to be exterminated. Austrian researcher Dr Herwig Czech has been most diligent in finding evidence in Austrian archives, on which Professor Sheffer has expanded.

However, rumours about Asperger had circulated for many years. These were tackled by Adam Feinstein when he wrote A History of Autism: Conversations with the Pioneers (2010). Feinstein interviewed Asperger’s daughter Maria as part of his research and wrote ‘there seems to be no evidence of this [affinity with Nazism] whatsoever – indeed, the very opposite is more likely to be the case’.

However, in more recent correspondence with the reviewer, he writes: ‘The evidence against Asperger is quite damning. Asperger’s association with the genuinely evil Erwin Jekelius is profoundly disturbing. I think we have to assume that Asperger was aware of Jekelius’s commitment to implementing euthanasia as permanent public policy in Austria.’

No reviewer to my knowledge has picked up on the commonality of medical and cultural links in 1920s Vienna, and that both Viennese paediatrics and the Camphill (Rudolf Steiner) movement deployed the term ‘curative education’ or HeilpŠdagogik. Indeed, Sheffer finds the Steiner connection but does not pursue it since it is not relevant to her subject.

Asperger’s pioneering work with disturbed children, his 1944 paper on autism which was only translated into English by Uta Frith in 1980, was being used in Camphill training in the 1950s.

Dr Karl Konig, himself a paediatrician who fled Nazi Austria to found the Camphill community in Scotland, was always ready to engage in dialogue, even with those with whom he had extreme differences of opinion.

Konig visited Asperger twice in Austria, and the latter was at Camphill in October 1959. His journal reveals that he knew something of Asperger’s involvement in the Nazi programme and it is a great pity that historians of autism have overlooked his insights.

The last word on future terminology, I leave to the chief executive of the National Autistic Society. After members were canvassed, Mark Lever said the NAS should stop using the term Asperger syndrome ‘except as a term to describe a former diagnosis while completely supporting people’s choices to use the term about their own diagnosis’.

The fence may be the best place to sit, even when the story of how it came to be sited will always be a very troubling episode in the long history of autism.

Michael Baron was one of the group of parents of children with autism who founded the National Autistic Society (as it now is) in 1962

 

 

 

 

 

 

 

 

More stories about:

Telling it like it is

Community Living 

Community Living

— Winter 2019

Parents David Tennant as Simon and Jessica Hynes as Emily are shown coping – and not coping

Telling it like it is  – There She Goes BBC 4, October-November 2018 TV Review

A darkly comic drama showing what it’s like to raise a child with a learning disability is an honest, refreshing alternative to the usual schmaltzy family stories, says Tracey Harding

A drama/comedy about a family whose nine-year-old daughter Rose has profound learning disabilities was in turn emotionally heart wrenching and laugh-out-loud funny.

Shaun Pye’s drama series There She Goes is based on his experiences of bringing up his daughter, who has an undiagnosed chromosomal disorder, and opened with ‘One day in the life of Rosie Yates’.

Pye has an illustrious pedigree as a writer for 8 Out of 10 Cats and The Jonathan Ross Show, as well as acting credentials on Extras with Ricky Gervais.His decision to write the series as comic drama makes the subject matter accessible to a TV audience, and reflects Pye’s experiences of parenting a child with learning disabilities being in equal parts dramatic struggle and comedy.

As Pye himself says: “It’s not a generalised story about disability. This sitcom doesn’t speak about any other parents’ experiences. There She Goes is a very authored piece. All I can do is tell my story as truthfully as I can” (Interview with BBC Media, 8 October 2018).

There She Goes is blessed with a stellar cast featuring David Tennant as Simon and Jessica Hynes as Emily, the beleaguered parents of Rosie, played with emotional intensity by Miley Locke.

The story knits together two timelines, past and present. The first focuses on the birth of Rosie and the heartbreaking realisation for Simon and Emily that something is wrong with their daughter.

Hynes gives a wonderful performance as she struggles to make sense of what is happening, and tries to convince her mother and health professionals that her feelings are not just those of an overtired new mother.

The second timeline brings us up to date with the family coping – or often not coping – on a day-to-day basis. They have developed their own ways of dealing with Rosie, including ignoring her, drinking copious amounts of wine and, most effectively, bribing her with Mini Cheddars. Miley Locke is compelling as Rosie and, although she is not a learning disabled actor, she is entirely convincing,

In his interview with BBC Media, Pye was asked whether a girl with a learning disability could have been cast. He said they had consulted professionals and been told that it would be too much for someone with a learning disability, as the demands on set are very tough.

I feel that given recent performances by actors with learning disabilities in recent TV dramas, it would have been an ideal opportunity to showcase the talents of one of the many young learning disabled actors who are eager for a chance to shine.

Bleak humour

The script is peppered with humour that at times could be viewed as politically incorrect. In a conversation with Simon as they watch bands on TV, Emily says “I love Simple Minds”, to which Simon replies “Please don’t talk about Rosie like that”.

This takes some getting used to initially, but the quality and strength of the writing ensure we are aware that, in the context of Simon’s life, these remarks are part of his coping mechanism and his shield against the reality of living with and loving his difficult daughter.

Whatever is said makes us aware that, like so many families in similar situations, each person gets through things in their own way, and we are never in doubt this is a story about love.

Pye has succeeded in writing an honest portrayal of life with a disabled child which, while dealing with a specific experience, has captured the emotions that will ring true with a wide audience of parents who are trying to do their best.

There She Goes is a refreshing alternative to schmaltzy family dramas and, with a child with learning disabilities as the central character, it is good to see this shown. It is commendable that the public has been presented with a series bold enough to tackle the anger and disappointment, as well as the humour and joy, of life with a child who has severe learning disabilities.

More stories about:

Going local with inclusive communities

Community Living 

Community Living

— Winter 2019



 Almere pilot ecovillage in the Netherlands: these communities are designed to be sustainable, using technology to grow food, generate energy, recycle water and manage waste

Going local with inclusive communities

Will adversity make us look at how we live together? Could people collectively take on responsibility for the welfare of everyone living in their area? Robin Jackson calls for a radical rethink

In the years ahead, there will be a significant reduction in the amount the state can spend on health and social care. Regardless of the effects of a possible Brexit, the industrial and commercial sectors are contracting, with a consequent loss in tax revenues.

Declining personal income will increase pressure on individuals and families to seek various ways to supplement reduced incomes or to replace earnings that are no longer available. This may lead to the establishment of locally based enterprises, which would reduce commuting costs and lower atmospheric pollution caused by using private or public transport.

Already there is a growing trend for people to work from home and be directly linked via the internet to a hub somewhere in the UK or abroad. Significant increases in the cost of food and drink at out-of-town shopping centres may encourage the creation of local community projects supplying the immediate neighbourhood with affordable, fresh food.

One possible consequence of these various trends is the growth of a sense of identity with the locality in which the residents live and a greater willingness to engage in local community activities, whether of a recreational, social, commercial or political nature.

At some point, this growing sense of identification with the local community may encourage residents to conclude it is their responsibility to provide or support different patterns of local health and social care, whether for young children, older people or those with a disability.

What is important here is that health and social care would no longer be seen as services or commodities but as efforts to strengthen the fabric of community life.

Big problems, small solutions

A problem has been that successive governments of all political persuasions have misguidedly placed their faith in solving problems relating to the provision of health and social services by attempting macro solutions, none of which have worked. If a caring society is to be created, we need to seek micro solutions that foster localism and community endeavour and enable people to truly ‘take back control’ of their lives.

If no appropriate action is taken, there is a strong probability that an American-style health and social care system will emerge, which is answerable to no one.

Regardless of whether governments intervene, economic, social, environmental and political pressures are going to force individuals and organisations to explore ways of adjusting to the rapid changes with which they are confronted.

The changing character of work, the growing obligation to be more closely involved with one’s immediate community, the need to develop more harmonious relations with one’s immediate physical environment,

the assumption by the individual of greater personal responsibility for one’s actions; all these will require considerable readjustments.

As a society, we are going to have to face the negative consequences of climate change, resource depletion, failing political institutions and the globalisation of services….

In addition to these global problems, we will have to confront the consequences of the greater use of robotics and the application of artificial intelligence (AI), which will lead to a dramatic contraction in employment in the industrial and commercial sectors.

Devolved responsibility

What I would like to see – circumstances may well dictate it – is a decentralisation of democratic structures, where the role of the state is significantly diminished and a greater role is played by regional governments (possibly 12 in England).

Most critically of all, local government should be given greater responsibilities and resources for health, social care and education. Such a process could be characterised as a ‘cantonisation’ of democratic structures.

The system is already used in Switzerland. The key to its success here is not from natural resources (which are in extremely short supply) but in the country’s distinctive political institutions, which ensure that ordinary citizens are involved in political decision making, and that no one interest group is able to benefit unduly at the expense of another.

While the Swiss central government is responsible for foreign policy, defence, federal railways and the mint, all other issues – education, labour, economic and welfare policies – are determined by the governments of the cantons and communes.

Each canton has its own parliament and constitution. The communes, which vary in size from a few hundred to more than a million people, have their own legislative and executive councils. Cantonal and communal governments are elected by the citizens living in their areas.

The cantonal system has served the ethnically diverse people of Switzerland for more than 700 years. We could learn to our benefit from the example set by Switzerland and adopt similar systems of local, citizen-based government here.

Eco communities

It is also relevant here to explore the development of eco communities where residents, as individuals and in groups, seek to become as self-supporting as possible. In various parts of Europe, large eco communities are being created.

In an eco community, there are:

  • A greater chance for the development of a sense of communal wellbeing
  • The possibility of a reduction in physical and mental health problems and
  • Less of a need for expensive, professional health and social care support.

Because of the nature of changes in the employment market, an increasing number of jobs are becoming based in the home or the immediate area, such as consultancy, commerce, finance, crafts and building maintenance.

Most important of all is the opportunity for people to experience a genuine sense of belonging to and of being cared for in a community. In such an environment, people with a learning disability and their families could be more fully integrated.

“In this environment, people with a learning disability

and their families could be more fully integrated”

Several pressures are leading to the growth of eco communities, including:

  • Ecological pressures, such as climate change and pollution (of the air, land, river and sea) and their impact on quality of life
  • Depletion of resources, such as fresh water, fossil fuel and forests
  • Technological pressures, such as the impact of robotics and AI.

Characteristics of eco communities include:

  • Power generated from a variety of sources, such as wind, solar, water, geothermal and waste
  • Growing as wide a range of food as possible from activities such as agriculture, horticulture and viticulture
  • A range of jobs in mini industrial and commercial areas, such as engineering, crafts and repairs
  • Local provision of social, educational and recreational facilities.

Paralleling the growth of eco communities is the increasing adoption in some Western European countries of the concept of rewilding. This is where communities assume responsibility for the quality of the physical environment and acknowledges humanity’s link to and dependence on this.

Rewilding involves changing to less expensive agricultural practices that lead to the regeneration of soil quality and productiveness, a reduction in use of fertilisers and pesticides, an improvement in air and water quality and a greater diversification in local wildlife, including insects, birds, mammals and fish.

In short, rewilding leads to a return to a natural balance and the creation of complementary habitats, where different species coexist.

An alternative way

Let us be under no illusion as to how serious the current situation this. The number of local authorities in England – including Northamptonshire and Somerset – which are being forced to abandon critical services for those most in need will increase.

If one combines recent forecasts that a further financial crash comparable to that of 2008 is in the offing with the damaging economic consequences of a possible Brexit, then we need as a matter of urgency to explore alternative ways to make provision for the most vulnerable in our society.

The past three decades have provided unambiguous proof that the national government is incapable of providing effective services for those most in need….

Robin Jackson is an author and social commentator on social care and learning disability and a visiting research fellow at the University of Hertfordshire.

Do you agree profound change is needed to the way we live? What kind of changes would you recommend? To respond to Robin Jackson’s article, email the editor: simonj@jarr.demon.co.uk

More stories about:

Getting creative in commissioning – conference report

Community Living 

Community Living

— Winter 2019

conference report

Getting creative in commissioning

Commissioners are determined to come up with novel solutions to ensure good practice

despite an uncertain future for social care. Rose Trustam reports on the commissioners’

conference, where service integration and new models of service provision were discussed

Unsustainable Pressure? The Future of Health and Social Care – National Commissioning and Contracting Training Conference, 2018

Amid a tough climate, this conference, run by and for commissioners, showed a determination to share, challenge and find solutions, as well as showcasing good practice.

Neither the government nor the opposition is providing the political strategic thinking social care needs, said ADASS president Glen Garrod, when he opened the event. Garrod, who is executive director of adult care and community wellbeing at Lincolnshire County Council, said the future of social care looked unsustainable, unstable and uncertain across the country.

In his ADASS role, he has previously said: “Pouring money into the NHS without investing in social care is like pouring water down a sink with no plug in.”

The conference was chaired by Mike Webster, retired assistant director of health and adult services at North Yorkshire County CounciI. The opening keynote speeches majored on health and social care integration, with a green paper due.

Garrod felt integration should cover housing, while Jon Rouse, chief officer at Greater Manchester Health and Social Care Partnership, said Manchester had asked for welfare benefits to be included.

Jacquie White, director of the National System Transformation Group at NHS England, identified three levels of integration, with budgets able to move between them. These are:

  • Neighbourhood level: this is where integration starts, and would involve strengthening community, preventive and post-hospital services, with neighbourhood-based budgets
  • Place-based level: different services with common issues would be brought together, and staff shared
  • System-level: this final level would employ joined-up digital strategies.

Garrod was concerned to maintain councilsÕ strong, direct local links and accountability, echoing the need to start with neighbourhoods. He commended the Local Government Association (2018) for having reached political consensus in its own green paper on social care.

With oversight of the development of the 42 sustainability and transformation partnerships, White explained how these would move towards integrated care systems, driven from the ground up by ‘getting under what’s really going on locally’. The next stage would be ‘shadow’ integrated care systems, involving the development of relationships where people give up things for the greater good, and move to partnership beyond health to wider public services.

Garrod shared some areas for optimism. These included personal budgets. He cited Warrington’s personal health budget pilot on end-of-life care which had enabled 83 of 100 people to die at home as they had wished (NHS England, 2018).

He also discussed homes with built-in design standards for later life, technology to improve independence and for self-help (including for online shopping), integrated practice, pooled budgets and joint commissioning. Self-assessment could be made simpler, he said; for example, Leeds City Council has a two-page form to complete, while Lincolnshire County Council’s runs to 24 pages.

Resilience is built through having the right people, communications and professionals, and people should share resources and collaborate, he said. An integrated experience should be possible, he noted, inviting delegates to consider how Amazon manages to give people an invisible integrated service.

Contracting differently

T

Tameside Metropolitan Borough Council and local providers have changed how they contract home care services.

Tameside worked with current and potential providers to design the new model and tender; it then contracted providers to cover six zones on a six-year contract. The work was funded by the Greater Manchester Transformation fund.

The provider uses the social worker’s assessment and personal budget to produce a care plan with the client. They both consider help from family and friends, assistive technology and anything that would help them to better connect with the community, as well as what is needed from Tameside Support at Home Service.

Around half of the 9,500 weekly hours for 950 people have been provided. There is a key worker system, which motivates staff so improves recruitment and retention, and providers maintain contact if people go into hospital. There are monthly provider meetings and pilots of low-level health tasks, digital health and electronic monitoring.

While funding is tight, more people are being helped within the same amount of time, and providers are integrating more with local services.

Conference presentations can be downloaded from  www.ncctc.co.uk/presentations/navigate/443/306

The presentation on A new model of home care – a person-centred approach can be downloaded from www.ncctc.co.uk/download_file/267/194

ADASS (2018) adass responds to public accounts committee report on social care and health integration. 2018. http://tinyurl.com/ybphxgou

Local Government Association (2018) The lives we want to lead. http://tinyurl.com/yakey8qs

NHS England (2018) Warrington. http://tinyurl.com/y962mhy2

More stories about:

Minimum Income, Major Injustice – full article

Community Living 

Community Living

— Winter 2019



* Stretched budget: a freeze on minimum income means people have less money in real terms

Minimum Income Guarantee – a deep financial injustice?

A combination of the failure by the  Government to update charging regulations and the financial squeeze which has taken place on local authority budgets has caused major injustice for the most vulnerable and disadvantaged within our society including people with severe learning disabilities. Accidental oversight, or a conscious and deliberate attack by Government on those least able to bear it and argue against it? Brian Collinge weighs the evidence

As  father of a son with severe learning disabilities and also a former local authority Chief Executive , I have  been looking into how people are now charged for the care they receive from local authorities. Sadly, I have concluded that  a combination of the failure by the  Government to update charging regulations and the financial squeeze which has taken place on local authority budgets has caused major injustice for the most vulnerable and disadvantaged within our society including people with severe learning disabilities. I am concerned to understand whether this is an accidental oversight, or is caused by civil service ineptitude or alternatively, is a conscious and deliberate attack by Government on those least able to bear it and argue against it.

Under the Care Act 2014, people qualifying to receive care support from their local authority are subject to an income assessment. If their income exceeds prescribed limits, they have to contribute to the cost of the care that they are receiving. The prescribed amounts and rules which the local authority must follow in assessing people are set out in the Care and Support (Charging and Assessment of Resources) Regulations 2014, laid before Parliament in October 2014. Different arrangements apply to people who enter a care home as opposed to people who receive care in the community. For people receiving care in the community, the regulations prescribed that local authorities must leave those receiving care with sufficient monies to meet their housing costs and any specific allowable disability expenses, plus an amount known as the minimum income guarantee..

The calculation of the minimum income guarantee as set out in the Regulations, was marginally increased by Department of Health circular to Local Authorities number LAC(DH)(2015)1, and these amounts took effect from 6th April 2015.  For single people and those with severe disabilities, the 2015 circular defines the minimum income guarantee as follows:-

Basic allowance if over 25                           £ 91.40

Disability premium                                       £ 40.35

Enhanced disability premium                     £ 19.70

Total                                                          £151.45

In each subsequent year, local authorities have received a circular telling them that there is to be no change in the amounts used to calculate the minimum income guarantee, so the above amounts still apply.

Had the amount been increased in line with the consumer price index (CPI), today’s figure would have been £157.74. If increased in line with the retail price index, the figure would have been £163.73. Thus, depending on which inflation index is used, the most disadvantaged have to pay between £6.29 and £12.28 per week more than they would have had to pay if the regulations and circulars had been adjusted to reflect inflation. To be fair, the CPI is probably the more appropriate index but even so, our most vulnerable have to pay £327 per year more than they would have had to pay because the amounts have not been adjusted to take account of inflation.

But this is only part of the added burden and injustice which is affecting  the most disadvantaged and vulnerable disabled within society. The minimum income guarantee is just that, i.e. a minimum. Local authorities do not have to apply the minimum and could leave the most disabled receiving care from them with more than the minimum. Indeed, when first introduced, many local authorities were more generous. Some local authorities, after calculating assessable income minus the minimum income guarantee, only took 75% of the resulting figure. Others took only 85%.  Now, the withdrawal of grants from local authorities and the financial squeeze on their budgets has meant that most have moved to taking 100% of the excess over the minimum guarantee. The move from 85% to 100% which local authorities have now generally adopted, will have cost those with high needs around a further £14 to £15 per week or about £754 per year. So in total, in the last three years the most disabled within are society are, as a result of these two influences, nearly £1100 a year worse off.

But yet again, this is not the end of the saga. The basic allowance, disability premium, and enhanced disability premium within the 2014 Regulations, were derived from income support basic allowances and premiums plus a buffer of 25%. However, the income support which people like my son used to receive has now been replaced by Employment and Support Allowance (ESA) and many such people will, because of their level of disability, be classifies as in the support ( unable to work) group of ESA. The equivalent basic allowance and premiums compared to Income support for such people under EAS are as follows.

Basic allowance                                                  £ 73.10

Disability premium                                            £ 64.30

Enhanced disability premium                          £ 16.40

Support group addition                                     £ 37.65

Total                                                                    £191.45

In the above figure of £191.45, the links to the old Income Support premiums and allowances ( see above figure of £151.45) are still  in part there. Remember, these old Income Support allowance were enhanced by a buffer of 25% in the 2014 charging Regulations.  So, if the basic allowance of £90.50 is discounted by the buffer of 25% you arrive at £72.40, which is close to the figure of £73.10 now used in calculating ESA. Again, if the  enhanced disability premium of £19. 45 in the 2014 regulations, is discounted by the 25% , it results  in a figure close to the figure of £16.40. However, the Disability figure of £64. 30 of ESA is higher than the 2014 Regulation figure of £39.85 even though this latter figure had been enhanced beyond the then income support premium by the 25% buffer. In addition, for those under ESA who are classified as in the support group, there is a new premium of £37.65. On the face of it therefore, the Government has been quite generous to people with severe disabilities and especially to those in the support group. This appears to be a welcome and generous act by Government towards those in greatest need. However, for those who need social care, this generosity is an illusion and  the increased ESA disability benefits are in reality, no more than a hidden subsidy to local authorities. This is because, since the move by local authorities, to take 100% of income above the minimum income guarantee, it is the local authority that will benefit from any income above the minimum income guarantee  and not the ESA recipient. If the Government had updated the 2014 Regulation premiums by substituting the new ESA premiums for the former enhanced income support premiums,, there would have been a beneficial increase for the individual. If Government  had gone further and  done what was done when the 2014 regulations were introduced and substituted the ESA premiums plus the 25% buffer enhancement, they would have been seen to be especially generous and caring towards the most disabled. Perhaps, in the existing financial climate expecting the old regulations to be updated to the new ESA allowances plus 25% would not be realistic but surely the failure to reflect ESA rates in the minimum income guarantee and or adjust the 2015 rates for inflation  must be unfair.

As a parent of someone with sever disabilities, I have always agreed that the whole of the care element of disability living allowance ( now incorporated into PIP) should be, as it is, taken into account and used to contribute to his local authority care costs. However, I also thought that the added premiums of income support that he received were there to help with his day to day living expenses and quality of life, in recognition that he could not and would not ever be able to work. Used in this way the disability premiums he received  would distinguish his income level from somebody without disability who could work  but who was currently unemployed. Now I am confused. My son receives £118.35  ( £64.30 + £16.30+£37.65) in ESA supplements. However,  because the 2014 charging regulations controlling the minimum income guarantee remain unchanged, he is only allowed to retain £60.05 ( £40.35+ £19.70 ). The rest is taken by his local authority for his care. If the excess is intended to be used to support his local authority care costs rather than his day to day living,, why is it not paid as part of his PIP care element rather than ESA?. If the intention of the added disability premiums under ESA were to offset local authority care costs, is not the Government being false in claiming that the changes to ESA are generous and help people with severe disabilities to have a level of income higher than they would under income support?

This is a sad saga but I find the following three aspects curious, worrying and disappointing.

Firstly, given that this is a major injustice affecting our most needed, why has there been no publicity or protest about it. Initially, I was inclined to think this was  because people with learning disability are a small  group and unlike the elderly, do not carry significant political power. However, some of the more severely disabled elderly people, including people with dementia who are not in a care home are, similarly affected. That said, the elderly unlike people with learning disability, do benefit from the triple lock on pensions. Also, unlike most  people with sever learning disabilities, before old age affected their well being, they would have had the opportunity to hold down meaningful jobs, save for their old age and have families

Secondly, although there has been no publicity about this injustice, there has been a lot of publicity  ( and Government action to legislate but not implement) for changes to the Care Act . If these changes had been implemented as enacted, there would now be a cap on how much people had to pay for their own care. This change has been delayed pending a green paper on the whole topic of social care. The main driving force behind the demand for a cap, is the wish of better off elderly people to pay less for their own care so as to be able to be able to leave more to their offspring or to help them  buy a property. Whilst I can understand why such parents may feel that the present system is unfair, they would consider this unfairness a minor irritant if they, as the parents of most kids with sever disability have had to do, had had to battle through out  the life of their child to get such basics as education , respite care, a care package  and ultimately some sort of reasonable hope that when, as parents, they came to die, there child would be OK and live in a society that actual cared

Thirdly, who should be blamed for this injustice? Ultimately, a Government Minister must be responsible, provided they knew about it and possible even if they did not.

When the Care and Support (Charging and Assessment of Resources) Regulations 2014 are passed, they were laid before Parliament. But what about Parliamentary oversight of whether change and updating to regulations is needed. Can a senior civil servant simply issue an annual circular to local authorities telling them that the Regulations are not to be updated for inflation or would he or she be required to get the approval of a Minister. The annual circulars that authorised no change to the Regulations state that they were all issued under section 78 of the Care Act 2014. Under Section 78 (3) of the Act, in issuing guidance or making regulations under the section, the Secretary of State must have regard to the general duty of local authorities under Section 1 ( promotion of individual well being. ). It is difficult to reconcile how telling local authorities  for 3 consecutive years, not to adjust amounts prescribed under regulation for inflation, is consistent with the well being duty under section 1. I feel that these circulars may even therefore be legally challengeable.

Reference.

Links to the 2014 Regulations and to Government annual circulars to local authorities are given below.

http://www.legislation.gov.uk/uksi/2014/2672/schedule/1/made

https://www.gov.uk/government/publications/lacdh20151-charging-for-care-and-support

https://www.gov.uk/government/publications/social-care-charging-for-local-authorities-2016-to-2017

https://www.gov.uk/government/publications/social-care-charging-for-local-authorities-2018-to-2019

*(Aleksandr Berdnikov/Wikimedia Commons)

More stories about:

Minimum Income Guarantee – a deep financial injustice?

Community Living 

Community Living

— Winter 2019

Minimum Income Guarantee – a deep financial injustice?

*  Stretched budget: a freeze on minimum income means people have less money in real terms

A combination of the failure by the  Government to update charging regulations and the financial squeeze which has taken place on local authority budgets has caused major injustice for the most vulnerable and disadvantaged within our society including people with severe learning disabilities. Accidental oversight, or a conscious and deliberate attack by Government on those least able to bear it and argue against it? Brian Collinge weighs the evidence

Under the Care Act 2014, people qualifying to receive care support from their local authority are subject to an income assessment. If their income exceeds prescribed limits, they have to contribute to the cost of their care. The rules which the local authority must follow in assessing people are set out in the Care and Support (Charging and Assessment of Resources) Regulations 2014. Different arrangements apply to people who enter a care home as opposed to people who receive care in the community. For people receiving care in the community, the regulations prescribe that local authorities must leave those receiving care with sufficient monies to meet their housing costs and any specific allowable disability expenses, plus an amount known as the minimum income guarantee.

In April 2015 the minimum income guarantee, set by the Department of Health and circulated to local authorities, was set at 151. 45 per week. It includes a basic allowance (for people aged over 25), a disability premium and an enhanced disability premium. Since then there has been no change in this amount. By not adjusting for inflation  this means that the value of the minimum income guarantee has dropped each year leaving the most vulnerable in society having to pay £327 per year more than they would have had to pay had their income level been adjusted.

Two other factors exacerbate the problem:

  • The minimum income guarantee is just that, i.e. a minimum, and local authorities could allow people with disabilities a higher level of oncome before they start contributing. Although some authorities used to be more generous, the withdrawal of grants and the financial squeeze on their budgets has meant that most have moved to taking 100% of the excess over the minimum guarantee. For some people this has meant a loss of over £700 a year.
  • The income support which people used to receive has now been replaced by Employment and Support Allowance (ESA). On the face of it this appears to mean an increased level of income for people on disability benefits. However, for those who need social care, the generosity is an illusion, as local authorities take 100% of income above the minimum income guarantee, so it is only they who benefit and not the ESA recipient. The government is therefore being disingenuous in claiming that the changes to ESA are generous and help people with severe disabilities to have a higher level of income.

Sad saga

This is a sad saga and there are three aspects which are particularly curious, worrying and disappointing.

Firstly, given that this is a major injustice affecting those who are most economically marginalised, why has there been no publicity or protest about it?

Secondly, although there has been no publicity about this injustice, there has been a lot of publicity (and Government action to legislate but not implement) for changes to the Care Act. These changes, if implemented, would put a cap on how much people had to pay for their own care. For people with severe learning disabilities and their families this is about basics like education, respite care and the reasonable hope that when parents come to die their child will be OK and live in a society that actual cares. However, the changes have been delayed pending a Green Paper on the whole topic of social care.

Thirdly, who should be blamed for this injustice? Ultimately, a Government Minister must be responsible, provided they knew about it and possibly even if they did not. What about Parliamentary oversight of whether change and updating to regulations is needed?  Under the Care Act 2014 the Secretary of State must have regard to the general duty of local authorities to promote individual well-being. It is difficult to reconcile how telling local authorities  for three consecutive years not to adjust amounts prescribed under regulation for inflation, is consistent with the well-being duty. I feel that these circulars may therefore be legally challengeable.

Brian Collinge  is the father of a son with severe learning disabilities and also a former local authority Chief Executive

A longer version of this article, with detailed information on income levels, costings and legislation, is available on our website at LINK HERE

 

 

 

More stories about:

A look back at Transforming Care: too damn complex in practice

Community Living 

Community Living

— Winter 2019

A look back at Transforming Care: too damn complex in practice

The official line on government policy to enable more people to live in the community is that it has been successful. Some people working in the system may disagree, says Steph Thompson

A dog-eared copy of the Harvard Business Review is glaring at me. Inside, a feature on tackling bureaucracy concludes: ‘These times call for a new era of accountability, but not the end to innovation … let us educate ourselves and our people so that the focus can be on ingenuity, not conformity.’

With 1.5 million workers, the NHS is possibly the world’s largest non-military bureaucracy. How on earth does one begin to grapple with the size of the NHS and achieve accountability alongside innovation and ingenuity? How can we connect the NHS to social care in an ‘integrated system’ (again)? Who has the power and ability to effect systemic change?

“One takeaway from Transforming Care is the unintended

consequences of oversimplifying complex issues”

I choose to be optimistic. To see a learning NHS. To believe that the values and goodwill of the vast majority of its workforce and, yes, of its political classes can nudge our NHS behemoth in the right direction. But …

With only months to go, the official line on Transforming Care is that it has been successful. I think some people working within the system may disagree. The numbers can be ‘interesting’.

For example, the pressure to meet discharge targets has meant quick fix solutions, sometimes involving beds in smaller units rather than the flexible support in flexible housing that was the initial vision.

Of course, low-hanging fruit gets picked first. It turns out that, for a minority of people living in NHS beds for a long time, moving out was relatively easy. The remaining majority, however, are more challenging to support to move back into their community, so progress against targets is harder.

Targets are essential but one takeaway from Transforming Care has to be the unintended consequences of oversimplifying complex issues. I’m sure the Home Office, in the wake of Windrush, feels the same.

There are parts of the country where the people leading Transforming Care have really given it a go. What worries me is that this is usually down to passionate individuals, navigating their way through a complicated system to commission support for complex individuals in hospital beds.

It worries me because, once again, great commissioning and delivery of packages of support for people with learning disabilities has taken place outside the mainstream.

Yes, the ‘system’ has created downward pressure but tenacity and respectful relationships between people linked to those in hospital who should have a different life is what has made the difference.

It worries me because the people leading Transforming Care are consistently stymied by resource flows between NHS England, clinical commissioning groups and local authorities. It worries me because we still have not sorted out what good community outcomes mean. It worries me because the demands on NHS leaders to ‘sort out the system’ can crush positive joint working, improvements and corporate memory of what works.

Last night, I dreamed it was all ok. I dreamed that the new accountable care systems rode to the rescue of our system, unblocked all blockages and made change happen. I dreamed that all those people busy trying to manage the complexity out of convoluted systems were suddenly able to focus on people with complicated support needs. I dreamed well-written plans actually became real.

I woke up disappointed. As someone long in the tooth in NHS and local government, I have a nagging sense of deja vu. I increasingly believe that the NHS must now follow the Bank of England on the path to independence. Because, politically, it’s all too damn complicated.

Steph Thompson is a director of Dimensions (www.dimensions-uk.org) and managing director of Waymarks (waymarks.org.uk)

More stories about:

Who decides how best to live?

Community Living 

Community Living

— Winter 2019

Who decides how best to live?

Making hay at Camphill: communities like this can provide a sense of belonging and peer support

Commissioners appear to be wary of placing people in Camphill communities, notes Andrew Plant. He questions whether ideology is leading to one model of housing with support being promoted above all others, and whether this restricts choice and is in people’s interests

The Camphill movement started in Aberdeen in 1940 and there are now 119 communities in 27 countries across the world.

Camphill communities in Scotland support more than 600 people of all ages with learning disabilities and other support needs. About two thirds of these live in one of the 11 communities, and the others have day placements.

Each community shares a common ethos of mutual support, celebration and purposeful work activities. The emphasis is on people sharing their lives together. There is a mix of unsalaried vocational workers who live in the community and staff who come in to work on a salaried basis. Most communities offer placements for young volunteers from abroad, adding to Camphill’s social diversity.

In 2017, Camphill Scotland, commissioned a research report to explore how the Scottish Camphill communities are viewed by key stakeholders.

The findings highlight the strengths of the communities from the point of view of family members (echoed by some professionals) – the friendly lifestyle, a strong sense of community, and a safe and secure environment. Other strengths were caring and well-trained staff and volunteers, a good range of choice and activities, and opportunities to learn skills.

However, the report adds: ‘the qualitative data suggests that local authorities are not proactive in searching out information on Camphill communities and it is likely to be parents/ carers/ family members who will prompt local authority consideration.’

If social workers and commissioning teams are not aware of the communities or are wary about supporting a placement in one, then it seems reasonable to explore this carefully and ask if it reflects a national policy that promotes one model of housing and support over another.

I have lived and worked in Camphill communities for more than 37 years so obviously I have a certain bias when it comes to objective evaluation of them. Nevertheless, my experience suggests they go far in addressing the major issues that people with learning disabilities face today, such as good housing, social inclusion, employment, healthy lifestyles, positive outcomes, feeling safe and feeling valued.

So, despite these apparent successes what are the factors that might lead to Camphill communities being less favoured by placing authorities?

“People do not have similar needs and wishes, so the arguments

should not be for one type of provision but a range”

Some recent reports argue that the best way forward for people with learning disabilities is normalisation, inclusion and independent living in the community, while others identify the need for more shared tenancies and group living situations to prevent social isolation and loneliness.

Conflicting fears and aspirations

This is a false dichotomy between ‘residential care’ and ‘living in the community’ – a dichotomy reflected both in the national discourse and commissioning decisions.

On the one hand group situations, sometimes referred to as ‘congregate care’, are regarded with some suspicion. They can be seen as institutional, there have been alarming stories of neglect and abuse, and there is a presumption that such placements are driven by a cost-cutting imperative.

On the other hand, there is concern that the aim to provide an independent life in the community can sometimes lead to social isolation and loneliness because the local setting might not be as welcoming as was expected, and lack the necessary facilities and levels of support.

In dismissing group living too easily, there is a danger of overlooking the value of peer support found when people share their lives, as the social theory of homophily – people wanting to be with people similar to themselves – suggests. It must also be remembered that the population of people with learning disabilities is not a cohesive and homogenous group, all with similar needs and wishes. The argument therefore should not be in favour of one type of provision over another, but for a range and meaningful choice around individual housing and support.

This dichotomy between group living settings and independent living is highlighted in the The Keys to Life -the Scottish Government’s 2013 Learning Disability strategy (https://keystolife.info). This is an aspirational strategy but it does, however, have some worrying aspects, particularly in relation to choice and control.

It emphasises that a range of choices should be available to people with learning disabilities and recognises some of the limitations of the independent living model. It also makes a positive reference to the Camphill communities: ‘Not everyone with learning disabilities will choose to live in their own home … For some people living and working in a Camphill community really brings out the best in them.’

Despite this, The Keys to Life strategy clearly comes out in support of independent living in the community. It also opposes out of area placements in the belief that people with learning disabilities should be allowed to live close to their families and other sources of local support.

This is the concern – that a strategy, discourse or ideology can lead to a restriction of the choices open to people when trying to find the most appropriate form of housing and support for their individual needs and wishes.

Living in a Camphill community and taking part in purposeful and productive work in that community, even if it means choosing to move out of your local authority area to do so, can be a positive choice with positive outcomes, as our research findings so clearly demonstrate.

Andrew Plant is manager of Supported Living Services at the Milltown Camphill Community in Aberdeenshire (www.camphillscotland.org.uk/community/milltown)

More stories about: