ReValuing Care Through Law: Challenging the Bedroom Tax and Benefit Cap on Care

Professor Rosie Harding
Birmingham Law School | email: r.j.harding@bham.ac.uk

It has been an interesting week for news about care giving and receiving in English Law. Two stories have made the news that reflect challenges to the value placed on care in our society: first, the Government’s announcement that recipients of Carers Allowance are to be exempted from the benefit cap; second, news about the Court of Appeal’s decision that the ‘bedroom tax’ (or, as the Government would prefer it to be called, the ‘Removal of Spare Room Subsidy’) is unlawfully discriminatory on grounds of disability and sex.

The news that carers in receipt of Carers Allowance are to be exempt from the Benefit Cap came during debate on an amendment to the Welfare Reform and Work Bill on 25 January 2016. Lest anyone be deceived into thinking that the current Conservative Government is suddenly going soft on benefit recipients, it is important to remember that the impetus for this change came from a judicial review decision of the High Court in October 2015. In Hurley & Others v Secretary of State for Work and Pensions [2015] EWHC 3382 (Admin), Mr Justice Collins held that the benefit cap regulations, whilst not unlawful in their entirety (considering the very high standard of unreasonableness that is required at judicial review) were nonetheless indirectly discriminatory on the basis of disability in a way that was not objectively justifiable. A government amendment is expected during the forthcoming House of Lords Third Reading debate that fully exempts those in receipt of Carers Allowance from the benefit cap. The change will bring those in receipt of carers allowance into line with others exempted from the cap.

The Court of Appeal decision in R (On the Application Of Rutherford & Ors) v Secretary of State for Work & Pensions [2016] EWCA Civ 29 has not met with the same level of agreement from the Government. In that case, the Court of Appeal found that the ‘bedroom tax’ regulations were unjustifiably discriminatory on the grounds of disability (in the case of the grandparents of a severely disabled teenager), and on the grounds of sex (in the case of a woman at serious risk of violence from an abusive ex-partner). In both of these cases, the claimants had been in receipt of Discretionary Housing Payments (DHPs) to mitigate the effects of their deduction under the bedroom tax rules. Importantly, others in similar positions may not be in receipt of DHPs, as the nature of the scheme, and the discretionary basis of it, means that provision varies across local authorities.

Since this decision, the Government has announced its intention to appeal to the Supreme Court, and a hearing on this case is to be joined with the appeal in R (MA and others) v the Secretary of State for Work & Pensions [2014] EWCA Civ 13, another case concerning the discriminatory nature of the ‘bedroom tax’ which is due to be heard by the Supreme Court in early March 2016. In the meantime, the Government have issued a bulletin to staff responsible for Housing benefit advising that “no action needs to be taken by local authorities following this judgment.” [1]

Leaving aside the legal issues that will be considered by the Supreme Court in a few weeks’ time, the news this week about regulating care and caring raises more general issues of interest. It reminds us of the necessity of a strong system of judicial review, with access to legal aid to support vulnerable claimants. While some of the more negative aspects of changes to the legal aid system for judicial review were undone following a challenge by solicitors, the policy of ‘no permission, no fee’ remains in place. The former Justice Minister, Chris Grayling was open about his desire to curb judicial review, which he berated “left-wing campaigners” for using as a “promotional tool” and to “to try to disrupt Government policies.” [2]

Given the rise in the use (and attempted use) of statutory instruments (which can be passed without democratic debate) rather than Acts of Parliament (which require full Parliamentary debate and the approval of both Houses) for controversial issues like tax credit cuts, or fox hunting, since the Conservatives came to power in 2010,[3] any attempts to restrict judicial review need to be taken very seriously indeed.

These cases also remind us of the importance of the Human Rights Act 1998 in defending the most vulnerable in our society. Both of these cases concerned challenges to the legislation on the basis of discrimination outlawed by Article 14 of the European Convention on Human Rights. In both cases it was the fundamental human right not to be discriminated against on the basis of a protected characteristic that was the reason for the decision (in these cases it was disability and sex) .

This Government wants to repeal our Human Rights Act. We still await the detail on proposals on a Bill of Rights which we have been told might be fast tracked into law by this summer [4]. These cases where Convention Rights safeguard the rights of vulnerable people with disabilities, their carers, and other whom the State has an obligation to protect from violence and harm remind us of the value of our Human Rights Act, and the high cost that repeal of it could place on vulnerable people.

I look forward to seeing the exemption from the benefit cap for carers come into law without delay. I also await the Supreme Court’s decision in the forthcoming appeal on the bedroom tax cases with interest. We must not, however, be complacent. The law’s ability to ensure that an appropriate value is placed on caring is dependent both on fair access to judicial review, and on the effective domestic protection of our Human Rights. We must safeguard both.

[1] From HB-U1-2006, downloaded from http://www.disabilityrightsuk.org/news/2016/january/bedroom-tax-no-change-dwp-appeals-court-case-and-issues-guidance.
[2] http://www.dailymail.co.uk/news/article-2413135/CHRIS-GRAYLING-Judicial-review-promotional-tool-Left-wing-campaigners.html
[3] http://www.independent.co.uk/news/uk/politics/government-accused-of-waging-war-on-parliament-by-forcing-through-key-legal-changes-without-debate-a6820176.html
[4] http://www.independent.co.uk/news/uk/politics/british-bill-of-rights-to-be-fast-tracked-into-law-by-next-summer-a6698261.html

Residence Rights for Carers of Union Citizen Children before the Court of Justice of the European Union

Residence Rights for Carers of Union Citizen Children before the Court of Justice of the European Union: Some Reflections on the Pending Case of Chavez-Vilchez and Others

by Dr. Fulvia Staiano
Postdoctoral Researcher, School of Law, UCC Cork
fulvia.staiano@ucc.ie

In the currently pending case of Chavez-Vilchez and Others [1] , the Court of Justice of the European Union (CJEU) was presented with two questions on the limits and scope of the principles established in its landmark Zambrano [2] judgment. These question, in particular, aimed to ascertain the scope of the principle established in Zambrano (and subsequently clarified in Dereci [3] ), whereby a third-country national parent of a child who is a citizen of a Member State enjoys a right of residence on its territory only when it can be said that the child would be forced to leave the Union in case of expulsion of the parent.

The Chavez-Vilchez case concerns a group of third-country national mothers who are the primary carers of their Dutch citizen children. The involved women opposed the Dutch authorities’ refusal to grant them with residence rights, motivated by the view that in case of their expulsion, the Dutch fathers of their children could still provide them with the necessary care. They submitted that they have sole parental authority and custody over their children, while the respective fathers are unwilling or unable to take care of them. In this light, the referring court has asked the CJEU to assess two main issues, both related to the interpretation of Art. 20 TFEU. First, it seeks to determine whether a Member State must grant the right to reside on its territory to a third-country national parent who carries out the primary care of his or her minor child, when the latter is a citizen of that Member State. Second, it asks whether for this purpose it is relevant that the legal, financial and/or emotional burdens do not weigh entirely on the primary carer, and whether it must be proved that the other parent is unable to assume responsibility for the care of the child.

These questions offer the CJEU with an opportunity to provide important insights into its understanding of care, particularly in relation to the quality and intensity of the carers’ involvement in their children’s upbringing for the purpose of qualifying them as indispensable. As is known, the CJEU has consistently granted residence rights to third-country national parents of Union citizen children on the grounds of the care provided by the former to the latter. In a first group of cases, this recognition was linked to the possibility for Union citizen family members to exercise their freedom of movement within the territory of the Union . Starting from the Zambrano judgment, residence rights for carers were also detached from the exercise of free movement and linked to the enjoyment of the substance of the rights attached to EU citizenship.

With the sole exception of its Carpenter judgment, in this case law the CJEU has so far consistently used the expression “primary carer” in respect to third-country national women involved. It was precisely this role of primary carer that prompted the conclusion that such care was essential for their children’s enjoyment of the rights either connected to their own Union citizenship or stemming from their father’s Union citizenship. The CJEU has not so far clarified the meaning of the notion of primary carer . However, this expression has arguably been used to refer to the essential and indispensable character of the care provided by a parent, and to the consequent dependence of Union citizen children from said parent.

On the other hand, in more recent judgments concerning third-country national fathers, i.e. in Zambrano and Dereci, the expression “primary carer” cannot be found. In the case of Zambrano, the dependence of the involved children from their father’s right to reside in Belgium was not assessed in terms of care at all, but rather inferred from the fact that both Mr. and Mrs. Zambrano – being irregularly resident third-country nationals – would be forced to leave the Union territory in case of denial of residence rights. In Dereci, the CJEU also overlooked the degree of involvement of Mr. Dereci in his children’s care, since his wife’s Austrian citizenship – and related right to reside in Austria – meant that their children would not be forced to leave the Union territory in case of his expulsion.

In this light, parental care does not appear to play a crucial role in the test carried out by the CJEU concerning the possibility for Union citizen children to fully enjoy the substance of the rights recognised by virtue of their status. The citizenship of both of their parents, in particular, can play an overriding role in this assessment.

Precisely for this reason, the outcome of the Chavez-Vilchez case will deserve specific attention. The presence of Union citizen fathers in the present case may indeed not be considered as a decisive factor to determine that the involved children would still be able to enjoy the substance of rights related to their Union citizenship in case of expulsion of their mothers. The lack of involvement of such fathers in their children’s care and upbringing, and their unwillingness or inability to ensure such an involvement in the future, will necessarily play a role in the CJEU’s assessment. This case, therefore, has the potential to foster key judicial clarifications on the meaning of primary care, on the degree and type of involvement necessary to consider parental care as indispensable and irreplaceable, as well as on the type and degree of fatherly involvement in childcare that may be reasonably expected and required in this context. A finding of the CJEU in the sense of recognising third-country national parents with residence rights on the grounds of the primary character of the care provided to their children would constitute a crucial development, bringing reproductive work to the fore and opening new perspectives for those devoted to it.

[1] C-133/15, Chavez-Vilchez and Others v. Raad van bestuur van de Sociale verzekeringsbank (Svb) and Others, lodged on 18 march 2015 [pending]. For an account of the factual grounds of the case, see Anouk Biesteker, Lukasz Dziedzic, Lorena Navia-Rodriguez, Gareth T. Davies and Janneke De Lange, Expert Opinion on Issues arising from the Pending Case of Chavez-Vilchez and Others (C-133/15), 30 June 2015, summary in English available at http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2641773 [last accessed on 28 October 2015].

[2] C-34/09, Gerardo Ruiz Zambrano v. Office National de l’Emploi, judgment of 8 March 2011.

[3] C-256/11, Murat Dereci and Others v. Bundesministerium für Inneres, judgment of15 November 2011.

Caring about P in the Court of Protection: the Re X scenario

by Jaime Lindsey, PhD Candidate and Teaching Associate at the University of Birmingham ( j.t.lindsey@bham.ac.uk)

In the recent Court of Appeal case, Re X [1], the judges’ obiter comments were certainly timely. The case concerned Deprivation of Liberty Safeguards (DOLS) cases under the Mental Capacity Act 2005 (MCA). The case itself turned on the question of whether P (the subject of the court proceedings) had to be a party to the proceedings in which they would potentially be deprived of their liberty. Whilst the Court of Appeal held that they did not have jurisdiction to hear the appeal, they made their feelings clear that P should always be a party to DOLS proceedings.[2]

Under the MCA, individuals can, in certain circumstances, be deprived of their liberty in a care home or hospital for the purpose of being given care or treatment.[3] Further, a person who may be deprived of their liberty outside of a hospital or care home, but still with sufficient degree of State involvement, would also require Court authorisation for the deprivation of liberty.[4] Many of us would expect that depriving a person of something so fundamental as their liberty should, at the very least, require them to have some input into the discussion. In fact, the ECtHR jurisprudence requires that a person who is to be deprived of their liberty should have access to a court and the opportunity to be heard.[5] This is not only important on an academic level; if a person who does not wish to be deprived of their liberty forcefully resists it, then the measures which need to be taken against them are surely an important factor for any court to consider before making an authorisation.

Yet this should not only be the case for removing somebody’s liberty. In my view, a more compassionate and inclusive approach should apply more broadly to the Court of Protection’s entire jurisdiction. In fact, new Court of Protection rules require the court to, at the very least, consider whether P should be required to participate in the proceedings and this is certainly a step in the right direction.

Involving P in the capacity question

As of 1st July 2015, the new Court of Protection (Amendment) Rules 2015 came into force. They require, amongst other things, that the Court considers whether it should make one of a number of directions relating to P’s participation in the proceedings (new Rule 3A Court of Protection Rules 2007). The possible directions it can make include: (1) joining P as a party (2) appointing a legal (or otherwise) representative for P (3) requiring P to address the judge (4) any alternative direction meeting the overriding objective. Whilst these rules certainly could have gone further, they show the Court’s increasing awareness of the greater need for P’s involvement.

Rule 3A is certainly an important step forward. It should ensure that judges and the parties are alive to the question of P’s involvement. Actually, involving P should be seen as a positive way to assist the Court in deciding whether he or she has capacity; a large part of the Court’s jurisdiction in health and welfare cases is about determining whether or not a person has the capacity to make a decision in the first place and this should not be forgotten. Clearly there will be cases where the capacity question is clear from the outset, for example consider the brain damaged adult on life support, but many more cases will be borderline and sometimes will involve adults who have no mental or learning disability at all.[6] Either way, to the extent that it is possible to do so and for capacity determinations at least, P should always be involved with proceedings.

A more inclusive approach?

The new rules should certainly go some way in achieving a more inclusive approach to decision making in the Court of Protection and are to be welcomed. However, the extent to which, and in what way, the options open to the Court will be used will need to be examined following implementation. A major factor in the increased involvement of P in proceedings will be the lawyers, social workers and carers who are involved in the case; if they see the benefit of involving P and argue in favour of this in court then is a judge really likely to refuse? Particularly in light of the obiter comments of the Court of Appeal in Re X, albeit that was in a slightly different context. In fact, the onus is not only on the judge in the case to consider this but it is also on the parties who can make an application to request such a direction. Those who know and work with P, and the lawyers on all sides, should be encouraged and feel empowered by recent developments to request P’s involvement.

The power of the Court of Protection in affecting the lives of individuals who fall under the MCA regime, both for the positive and negative, is enormous. In some ways, whether or not the outcome of the cases is any different as a result of the involvement of P is not the measure of success; what is vital is that people feel that their voice is heard, particularly in relation to decisions affecting their own lives. This empowers people to “buy in” to the ultimate decision that might be made on their behalf. That said, involving P in the decision making process will hopefully lead to better and more context sensitive decisions being made and the new rule 3A is a first step in achieving this.

[1] Re X [2015] EWCA Civ 599

[2]Ibid per Black LJ at para 108

[3] Pt1 s.1(2) MCA

[4]Under s.16(2)(a) MCA

[5]Winterwerp v The Netherlands [1979] 2 EHRR 387

[6] See for example IM v LM and AB [2014] EWCA Civ 37

Care Paid and Unpaid: Social, Economic and Human Rights Concerns

by Dr Joan Garvanwww.maternalhealthandwellbeing.com

Attempts to achieve gender equity have reached a new high water mark and the recognition and redistribution of care, both paid and unpaid, stands at the centre of this arena. The Australian secretariat – Economic Security 4 Women – have produced landmark reports, both scoping and quantifying the value of the ‘care economy’ and, more recently, Professor Marilyn Waring addressed the topic of care and dignity in the annual Pamela Denoon Lecture Series. Here below are key points from these papers and central messages made by Waring.

Two significant Australian reports on the care economy have been produced over recent years: Scoping the Australian Care Economy A Gender Perspective (2010) and Counting on Care Work in Australia (2012). These projects are concerned with the lifelong economic well-being of women. Though they are particular to Australia and reference local government policies, programs and strategies, they draw from an international body of research and deal with common concerns.

The first report references the importance of data collection and brings attention to landmark work in the Massachusetts case study that used United States Census and Time Use data to measure both paid and unpaid care work [1]. The author Valerie Adams notes tensions between unpaid work, voluntary work and paid work. She draws attention to the ‘relational’ nature of care work, and references the concept of ‘provisioning’ for human need. The report used the notion of ‘care work’ to depict both the paid and unpaid sectors. Adams considers definitions and current issues in the Australian care economy. She surveys relevant government policy and makes numerous recommendations for further research and data collection.

Counting on Care Work in Australia (2012) further develops this arena by quantifying the value of the paid and unpaid care sectors to the Australian economy. In 2009-10 twenty per cent of all paid employment in Australia was in the care sector. Care workers receive 96 cents for every dollar earned by the average Australian worker, and female workers earn on average 84 cents in the dollar to male care workers. The report valued the unpaid care sector at $650 billion with sixty per cent of this contribution being made by women aged 25 to 64. The report furthermore outlined and quantified government investment in the care sector. The authors make recommendations for further work in light of: demographic change; inter-generational concerns; and the continuing economic and life course implications for women.

Marilyn Waring prefaced her recent lecture Care and Dignity: Major challenges to economics and human rights (transcript and video available online: http://pameladenoonlecture.net/) with the proposition that over millennia care has been the primary responsibility of women. She has changed her emphasis since the publication of Counting for Nothing: What men value and what women are worth (1988) [2] and now frames these concerns within a Human Rights perspective.

Waring raised problems for the use of ‘care’ as an analytical category, arguing that most often carers are responsible for a myriad of associated tasks that could be lost through a continuing association with unpaid work. Nevertheless, drawing from studies from British Colombia, New Zealand, Papua New Guinea and the United Kingdom, she sets out a strident case whereby the human rights of care givers are being flouted. She and others set up a questionnaire for a Commonwealth report drawing from Amartya Sen’s capability approach to human rights which references choice, rest, health, meals, work and political involvement, and found multiple breeches.

With governments around the world withdrawing from social and welfare programs these kind of arguments are critical if we aren’t going to ‘throw the baby out with the bathwater’. Care, both paid and unpaid, are clearly significant to the health and well-being of the community, but further to this gender equality will remain allusive if we don’t see transformational change. Unfortunately the issues are complex and though there is increasing reference to the work of unpaid care in terms of achieving gender equity, there is a need to bolster and popularize the debates.

References

[1] Albelda, R., Duffy, M., Folbre, N. (2009), Counting on Care Work: Human Infrastructure in Massachusetts, University of Massachusetts, MA, Massachusetts

[2] In a recent anthology, Counting on Marilyn Waring: New Advances in Feminist Economics, edited by Margunn Bjornholt and Ailsa McKay, 31 authors from nine countries outline the wide ranging impact and resonance of Professor Waring’s work as well as the current frontiers of feminist economics.

 

 

What’s Wrong With Best Interests?

For the last while, I (along with many others working in this area)[1] have been struggling with the question of how to reconcile the Mental Capacity Act 2005 (MCA), with Article 12 of the UN Convention on the Rights of Persons with Disability (CRPD). As many readers of this blog will know, section 1(5) of the MCA requires that any decision made for or on behalf of a person who lacks capacity needs to be made in their ‘best interests’. In contrast, Article 12 CRPD requires that disabled people’s rights to equal treatment under the law are respected. This right includes the right to “enjoy legal capacity on an equal basis with others in all aspects of life” (Article 12(2)). In their clarificatory General Comment No 1 on the scope and interpretation of Article 12, the Committee on the Rights of Persons with Disabilities made clear that “The ‘best interests’ principle is not a safeguard which complies with article 12 in relation to adults” (paragraph 21).

Given the centrality of best interests decision making in contemporary English mental capacity law[2], we need to give serious consideration to how these two, seemingly opposing, positions can be reconciled. In order to get to that point, it will be helpful to think through the critiques of best interests.  Five substantive critiques of best interests have been put forward in the academic literature on this topic. Firstly, best interests decision making can be “vague, uncertain and unpredictable.”[3]  Because of this, it is very difficult to predict what the outcome of a best interests determination will be. There is usually no single, logical, best outcome in the difficult cases where best interests are to be addressed. Courts, healthcare professionals, social workers and carers instead select from any number of possible outcomes.

Best interests decision making is often paternalistic, and imbued with the beliefs and values of the decision-maker, rather than those of the person who is at the centre of the decision.[4]  A third critique of best interests, originally put forward in the context of family law,[5]  is that it may be incompatible with Article 8 rights to respect for private life, family life and home. This may become especially troublesome when considering things like residential placements,[6] whether or not these amount to a Deprivation of Liberty under the legislation (another big issue in contemporary mental capacity law).

The CommitteeRPD raise two further issues with best interests decision making. They argue that ‘best interests’ denies legal capacity on the basis of disability. This can take three forms, where legal capacity is denied because of: the status of the individual as having a particular diagnosis or impairment; the outcome of a particular decision is perceived to have negative consequences; or on functional grounds the person is not considered capable of making a decision. This functional approach is very close to the MCA understanding of capacity. Under the MCA, whenever a person is determined to lack capacity under the functional test set out in section 3, another person makes the decision instead, taking into consideration the views of that person, their family carers and the professionals involved in their care. The CommitteeRPD’s criticism of the functional approach is enlightening:

“This approach is flawed for two key reasons: (a) it is discriminatorily applied to people with disabilities; and (b) it presumes to be able to accurately assess the inner-workings of the human mind and, when the person does not pass the assessment, it then denies him or her a core human right — the right to equal recognition before the law. In all of those approaches, a person’s disability and/or decision making skills are taken as legitimate grounds for denying his or her legal capacity and lowering his or her status as a person before the law.”  (Committee RPD, General Comment no 1, para 15)

A final critique of best interests is that it substitutes someone else’s decision (whether a health care professional, a judge, a social worker, a carer, or a family member) for that of the person with a cognitive impairment. Article 12 of the Convention on the Rights of Persons with Disabilities, by contrast, requires that people are supported to make their own decisions. Only when all practicable means to support the person to make their own decision have been exhausted would a decision be made on their behalf, in accordance with the best interpretation of their will and preferences, following Article 12(4).

Could this mean the end of best interests in our mental capacity law? Perhaps. If we take these criticisms of best interests seriously, it may well be that we need to re-think best interests under the MCA to ensure our compliance with the rights of persons with disabilities under the CRPD. There appears to be little appetite for a change to the language of best interests under the MCA. Instead, the focus of the House of Lords Select Committee was on better implementation of the empowering ethos of the legislation. But a key problem, as I see it, with the implementation of the MCA is the way that MCA best interests are routinely conflated with clinical understandings of ‘best interests’ despite the different normative content of the two approaches. As a result, it seems clear that we do need to find a new lexicon for decision making by, with and for people with intellectual disabilities, one that doesn’t rely on the words ‘best interests’, to ensure that supported decision making is the reality in all but the most difficult of cases. And when a person truly can’t make a decision for themselves, it must be their own preferences and values that guide the decisions made on their behalf. The task ahead is to find that lexicon, and to use it to build a new approach to empowering individuals with intellectual disabilities to shape their lives according to their own values, wishes and preferences.

[1] Flynn E & Arstein-Kerslake A ‘Legislating personhood: realising the right to support in exercising legal capacity’ (2014) 10 International Journal of Law in Context 81; Richardson, G ‘Mental Disabilities and the Law: From substituted to supported decision-making?’ (2012) 65 Current Legal Problems 333; House of Lords Select Committee on the Mental Capacity Act (2014) Mental Capacity Act 2005: Post-Legislative Scrutiny (London: TSO).
[2] Donnelly, M (2009) ‘Best Interests, Patient Participation and the Mental Capacity Act 2005’ Medical law Review 17: 1-19.
[3] Choudhury, S (2008) ‘Best Interest in the MCA 2005 – What can Healthcare Law Learn from Family Law?’ Health Care Analysis 16: 240-251.
[4] Fennell, P (2008) ‘Best Interests and Treatment for Mental Disorder’ Health Care Analysis 16: 255-267.
[5] Eekelaar, J (2002) ‘Beyond the welfare principle’ Child and Family Law Quarterly 11: 387.
[6] Harding, R (2012) ‘Legal Constructions of Dementia: Discourses of autonomy at the margins of capacity’ Journal of Social Welfare and Family Law 34(4): 425-442.

Peripheral Thinking and Abortion Care

By Ruth Fletcher

‘Peripheral thinking’ seems to me to be one useful framework for identifying what states do when they respond to residents’ practices of travelling away for care.   States take a variety of actions when their residents cross borders for care; actions which produce, stigmatise, ease, regulate and represent that flow all at the same time pulling it in different directions. If we want to understand better the effects of those actions and perhaps even how to steer them, we need a way to differentiate between them while acknowledging the transnational space they occupy. Here I want to distinguish between three different kinds of peripheral thinking that inform such state actions – inverted, tangential and circular – in order to consider further how best to respond to the spaces for engagement that they open up. My reflections work out from the example of state actions and transnational care flow with which I’m most familiar, that of Irish state practices as they contribute to women’s outward flow for abortion care (Fletcher, 2013).

Inverted peripheral thinking

When states adopt law and policy that support travel for care whose provision is restricted at home, one kind of peripheral thinking they use to justify their actions takes an inverted form. They claim that the failure to provide the particular care at issue is actually evidence of a central role in international care provision and not a peripheral role.   In arguing that Ireland is an international leader in care for the ‘unborn’ and in maternity care more generally, the state has often represented its failure to care for pregnant women as a success. This is a familiar if crude form of thinking, which Barrett (1992), drawing on Marx, called the ‘camera obscura’ version of ideology.   The periphery represents itself as central to the delivery of care (to the ‘unborn’), with the effect of negating a peripheral role and obscuring failures in care delivery (to pregnant women).

Tangential peripheral thinking

But inverted peripheral thinking is not the only rationality that states use when they play a role in generating outward flows for abortion care. They may turn authoritarian in restricting or punishing travel for abortion care (Fletcher, 1998), but that is relatively rare. It is more usual for states that are peripheral to the provision of abortion care to end up accommodating use of that care to some extent because their residents compel them to. In the 1990s the Irish state famously compromised on its anti-abortion position by constitutionally recognizing freedoms to travel to and receive information about abortion care abroad. Since then the Crisis Pregnancy Programme has developed a network of predominantly pro-choice counselling agencies throughout the Republic of Ireland which provide free pregnancy counselling and post abortion check ups.

In a two-tier health system where many people pay fees to attend a general practitioner, the provision of free pre- and post- abortion care, with all its limits, is significant. In using regulatory techniques such as public funding, training and communication to normalize travel for abortion care, the Irish state demonstrates tangential peripheral thinking. Here the peripheral thinker does not want to become core as care provider, but instead approaches the core provision of abortion care sideways.   Peripheral thinking develops tangential connections with the core provider of abortion care by taking on activities which are a key part of abortion care, but are themselves on the periphery of that care, namely the provision of information, counseling and check ups. Tangential peripheral thinking then is conscious of being at a distance from core care provision, and does not want to become core. Rather tangential thinking connects periphery and core care providers by taking peripheral care activities, which are needed for the provision of core care, as the object of its attention and facilitation.

So far, civil society critics of Irish abortion policy have focused on the discriminatory and hypocritical aspects of this kind of tangential thinking (e.g. ARC, CRR, DfC, ICCL, IFPA, WHRA). Travel policy has discriminatory effects and is not an adequate means of the state meeting its public responsibilities, because the less mobile will be less well served. Abortion travel policy is hypocritical because it cedes its domestic anti-abortion moral stance and supports access to abortion on grounds that would not be legal within the territory. But these critiques can retain their truth while we also recognize that travel policy has some positive effects from a feminist perspective.

We can welcome the way that this public recognition of women’s use of abortion care has likely contributed in some way to increased tolerance of abortion.   Opinion polls now regularly reveal greater levels of support for abortion than the state is willing to entertain in domestic provision. Although, as in many other countries (e.g. Sanger, 2014), Irish women are far from feeling free to speak openly at will about their abortion experiences, there have been several initiatives which tackle the association of abortion with stigma in the public sphere (Enright, 2014). The state’s tangential peripheral thinking has opened up (and indeed arguably resulted from) spaces for feminists and pro-choice advocates to engage and push the state further towards recognizing and serving women’s needs.

Circular peripheral thinking

A third kind of peripheral thinking that we see in Irish abortion travel policy takes a circular form and argues that there is nothing the state can do to change its own practices. Here the state argues that its own rules, or the views of the people, prevent it from acting to cure some harm or wrong that it cedes is in contravention of international human rights norms. There was a particularly spectacular example of this kind of peripheral thinking evident in the state’s response to the UNHRC during Ireland’s review under the ICCPR in July 2014. The Minister for Justice and her staff faced hard-hitting criticism by the HRC members for the failure to protect women’s civil and political rights in relation to abortion but also more generally (e.g. Cahill, 2014).

Representatives of the Department of Justice responded by relying on Article 25 and the right to vote to say that past abortion referendums meant it could not do any more legally to bring Irish abortion law into conformity with the Covenant. As Enright tweeted during the hearings (I’m paraphrasing), “to recap, the Department of Justice has just argued that Parliament can vote to inflict inhuman and degrading treatment on women”. Much was made at the time of this failure of the state to recognize that this ‘tyranny of the majority’ type argument contradicted the whole premises of the state’s claimed commitment to human rights, and indeed HRC member Mr Shany asked the state party to withdraw the relevant statement.

But here the point I want to make is that this way of thinking is a circular denial of sovereign power to make and interpret law. This state is so embedded in the periphery of abortion care that it can’t even imagine the possibility of proposing a referendum which would liberalise abortion provision, rather than restrict it (see further Flinterman’s comments). A state which refuses to act in legislating for abortion care (except when forced to by the ECtHR in ABC) on the grounds that its own legal rules so prevent, or that the people would not tolerate such action, has a strange understanding of its own legal power and moral responsibility.

In representing itself as a passive effect of its own legal authority, the state adopts a circular form of peripheral thinking which renders it eternally peripheral to its own power in a spectacular act of legal misrecognition. Of course, the state could introduce a Bill to remove Article 40 3 3. It could decriminalize abortion. It could promote an interpretation of Article 40 3 3 that recognizes substantive differences between pregnant women and fetuses, and permits domestic abortion in a way that would likely reduce the outward flow. But it chooses not to.

Conclusion

States, particularly the Irish state, have actually been quite creative in responding to their residents’ practices of travelling abroad for care that is restricted at home. They have used a range of regulatory techniques that have effects on cross border care flows. In the case of law and policy on abortion-related flows, these different techniques present challenges and resources to those of us who wish to make abortion access easier. First of all, we need to throw our net more widely when we try to capture legal tools that have an effect on women’s abortion practices. The legal instruments which restrict women’s access on the territory of the nation-state are significant. Inverted peripheral thinking, which denies harms to women while celebrating care of the ‘unborn’ as a marker of international leadership, arguably takes care and international norms seriously, but requires redirection.

But as women’s cross-border abortion practices illustrate, norms of domestic restriction are not the only legal instruments that are significant. Regulatory measures that promote non-judgmental information and counselling and provide public funding do acknowledge extra-territorial abortion use and attempt to reduce harms to travelling women. Working with such tangential peripheral thinking may provide further opportunities to destigmatise abortion and promote a harm reduction framework. And finally, the kind of circular peripheral thinking, which sees the state deny its own power to have an impact on care flows, provides welcome opportunities for reminding the state that women are not the only ones who bear public responsibilities for care provision.

PS I wrote this before the news of the recent abortion refusal case broke.  My initial thoughts on that failure in abortion care are here: http://humanrights.ie/constitution-of-ireland/contesting-cruel-treatment-ruth-fletcher/

If you would like more information about civil society’s campaigning responses to this case and more generally please see: http://www.abortionrightscampaign.ie and https://www.facebook.com/pages/Speaking-of-Imelda/571659212932533

Comments welcome.

‘Who is Helping Who?’ – Co-Production and Professional Boundaries within Social Care services.

By Nick Andrews

I have been working in education and social care for thirty years, and have seen various new initiatives and buzz words come and go, whilst the fundamental principles of humanity remain the same. ‘Co-production’ in its truest senses is grounded in these principles. However, as with the concepts of ‘personalisation’ and ‘reablement’, there is a real danger that the term  ‘co-production’ is misused for hegemonic purposes to cover up what is essentially a cost cutting exercise. Under this scenario, individuals and their communities are expected to take on more responsibility for their own well-being whilst the machine of impersonal and ‘professionalised’ public services carries on as it always has done, albeit it with a few less staff employed. In my opinion, this would be a travesty and missed opportunity to restore warm humanity as the driving force for public services, not compliance with increasingly centralised and de-personalised processes and systems.

One of my favourite quotes by the theologian Martin Buber is ‘all real living is meeting’. Please note that Buber’s understanding of the term ‘meeting’ is much richer than the idea of putting a group of people together in a room or placing nurses and social workers in the same office, which is commonly assumed to result in integrated practice. I am sure many people will share my experience of being in meetings where no one actually met, where each person had their own agenda and the purpose of the meeting was to get this across – to win the argument.  For Buber, ‘meeting’ is about genuinely connecting with other people and being changed in some way by the process. In order to explain this process, he talks about two ways of relating to people and the world, which he calls ‘I-It’ and ‘I-Thou’.

In ‘I-it’ relationships, the person is detached and unaffected. In ‘I-Thou’ relationships, the person is attached and vulnerable. Tom Kitwood, in his seminal book ‘Dementia Reconsidered – The Person Comes First’ talks about his experience of seeing how people living with dementia were dehumanised through receiving emotionally detached task based care:

‘A man or woman could be given the most accurate diagnosis, subjected to the most thorough assessment, provided with a highly detailed care plan and given a place in the most pleasant of surroundings – without any meeting of the I-Thou kind ever having taken place’ (Kitwood, 1997)

By contrast, I believe that genuine co-production facilitates and nurtures the development of ‘I-Thou’ relationships between all parties, which in so doing begins to challenge the prevailing understanding of professionalism and professional boundaries.  In relation to this, I am currently co-ordinating a NISCHR and Joseph Rowntree Foundation (JRF) funded project in Wales, which is focused on the use of evidence from their ‘A Better Life – for older people with high support needs’ programme, along with other forms of evidence in social care service and workforce development.

The ‘A Better Life’ programme has identified that relationships are key and ‘Often it is the simple things that bring the most pleasure (and the lack of them can bring a sense of sadness and loss) and services do not always seem to be very good at delivering ‘the ordinary’’. (Blood, 2013 p13)

The research challenges also call for a different way of working, which is often alien to the world of emotionally detached and compliance focussed task based care, which is summed up nicely in the following quote by Edgar Cahn:

‘The world of helping others in need is now built around one-way transactions…. and with the best of intentions, one-way transactions often send two messages unintentionally. They say: “We have something you need – but you have nothing we need or want or value.”’  (Cahn, 2004).

In a series of recent focus groups and learning events involving older people, carers and frontline staff, I have been struck by how many people feel that current regulation and guidance is risk averse restrictive and at worst destructive of human relationships. For example, workforce regulation states ‘the inappropriate use of touch is not permissible’, rather than ‘the appropriate use of touch is fabulous and to be encouraged’. This is a particular issue for people living with dementia, who often have to express themselves and connect with others through feelings and emotions. Frontline staff talk have talked about feeling guilty when they do little kind things that are not written in the Care Plan or receiving small gifts of appreciation, older people have been ‘told off’ (in the name of health and safety) for pouring tea for others in day services, and carers have been made to feel that they no longer have a role when the person they love goes into a care home.

At the heart of co-production, is an understanding that everyone has something to contribute and that exchanging these contributions is enriching for everyone concerned.  I am reminded of the work of Jean Vanier, who established the L’Arche Communities in learning disability services. Vanier did not see his role as caring for people with learning difficulties, but rather sharing his life with them and being open to receive and learn from them as much as to offer them support.

I am reminded of one of my earliest experience of working in social care services. It was 1984 and I had started my first job as a residential support worker in a children’s home. I thought I was the ‘sorted one’ who was employed to help others. I worked hard to form good working relationships with staff and children in the home, but one boy, who had experienced a lot of hurt in his life, kept his emotional distance. As anyone who knows me well can tell you, I am not gifted in DIY or anything that involves fixing something mechanical. One day, I was trying to repair my bicycle (I did not drive at the time) and was getting nowhere fast. The boy walked past me and said ‘I’ve got a book about repairing bikes, do you want to borrow it?’. I am pleased to say that I took up his offer and our friendship took off from that day. He is now a happily married 43 years old who lives on the other side of the country, but we still keep in contact via Facebook and phone and offer each other support and encouragement whenever we can.

Jean Vanier once said, ‘I am struck by how sharing our weakness and difficulties is more nourishing to others than sharing our qualities and successes’. This is an important message for social care practitioners and agencies. We need to open our ears, our eyes and our hearts to the people we work with, which might involve sharing our vulnerabilities and concerns and allowing ourselves to be changed by genuinely ‘meeting’ with them in truly co-productive relationships.

 

References

Blood, I. A Better Life – Valuing Our Later Years, York, Joseph Rowntree Foundation, available at: http://www.jrf.org.uk/publications/better-life-valuing-our-later-years

Cahn, E. (2004), No more throw away people – the co-production imperative, Washington, Essential Books

No Room at the Inn? Older LGBT individuals’ unmet housing needs

Stonewall Housing, in conjunction with Age UK, Opening Doors London and Rainbow Hamlets, is holding a major Older LGBT Housing conference on 18th June 2014. Entitled ‘Bona Latties’ (Polari for Good Housing) it aims to give voice to older LGBT individuals’ housing wants and needs and create a space to discuss them with providers. Older LGBT unmet housing needs are a problem in the following ways:

  • Mainstream housing provision for older people is perceived as heteronormative, homophobic, biphobic and transphobic(1)(2)(3);
  • There is a lack of specialist housing, i.e. housing run for older LGBT individuals, by LGBT individuals (4)(5)(6);
  • There is a lack of specific housing choices for older LGBT, e.g. those who want gender specific housing (e.g. men/women only), which many older individuals, especially older lesbians, want (7). It’s an outdated ‘one size fits all’ (8) approach;
  • There is a lack of specialist domiciliary care for older LGBT people, with the exception of Pride in Care UK. Many older lesbians and gay men in particular re-closet themselves in their own homes, for fear of prejudice from carers (9);
  • There is a lack of services to support older LGBT in setting up housing cooperatives where they provide one another with reciprocal support and/or buy in care which is respectful of, and meets, their needs.

As a result of these unmet needs, older LGBT individuals are left with a stark choice: ‘the prospect either of living alone without support or having to enter [sheltered housing and] care homes which will not meet their needs.’ (10) We say ‘it gets better’ to younger LGBT people. And for many that may be true. But the sad the truth is that in older age it gets worse. As much as we should address the needs of LGBT youth, we also need to address the needs of older LGBT individuals as well. Schools are a problem for LGBT youth. Sheltered housing and care homes are a problem for LGBT older people. We must tackle both.

References

(1) Ward, R., Pugh, S. and Price, E. (2010) Don’t look back? Improving health and social care service delivery for older LGB users. London: EHRC;
(2) Fredriksen-Goldsen, K. I., et al (2013) ‘Physical and Mental Health of Transgender Older Adults: An At-Risk and Underserved Population.The Gerontologist doi: 10.1093/geront/gnt021First published online: March 27, 2013;
(3) Jones, R. (2010) ‘Troubles with bisexuality in health and social care.’ In Jones, Rebecca L. and Ward, Richard (eds) LGBT Issues: Looking beyond Categories. Policy and Practice in Health and Social Care, pp 42-55, Edinburgh: Dunedin Academic Press.
(4) Musingarimi, Primrose (2008). Housing Issues Affecting Older Gay, Lesbian and Bisexual People in the UK: A policy brief. London: The International Longevity Centre – UK (ILCUK)
(5) Carr, S. and Ross, P. (2013) Assessing current and future housing and support options for older LGB people. York: Joseph Rowntree Foundation.
(6) LGBT Movement Advancement Project (MAP) and Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (SAGE) (2012) Improving the Lives of Transgender Older Adults: Recommendations for Policy and Practice. New York: Services and Advocacy for GLBT Elders and National Center for Transgender Equality.
(7) Westwood, S. (submitted): ‘“We see it as being Heterosexualised, being put into a Care Home”: Residential care concerns and preferences of ageing sexual minorities.’ Ageing and Society.
(8) Eaglesham, Phil (2010) ‘The Policy Maze and LGBT Issues: Does One Size Fit All?’, in R. Jones & R. Ward (eds) LGBT Issues: Looking Beyond Categories, pp 1-15. Edinburgh: Dunedin.
(9) Knocker, S. (2012) Perspectives on ageing lesbians, gay men and bisexuals. London: Joseph Rowntree Foundation.
(10) Guasp, A. (2011) Lesbian, gay and bisexual people in later life. London: Stonewall.

 

‘Counting the Costs? Resources, Austerity and Older LGBT People’

The ‘Minding the Knowledge Gap’ ESRC funded seminar series held its fourth seminar at the University of Surrey last week. This seminar, called ‘Counting the Costs? Resources, Austerity and Older LGBT People’ addressed the material, financial and social resource implications of lesbian, gay, bisexual and trans (LGBT) ageing, particularly in times of austerity. It was well-attended by participants from a range of backgrounds: LGBT individuals (in all their diversity, including some in older age); advocates and activists; academics; social policy makers; and the police. There were two speakers. Dr Noah Uhrig, from the Institute for Social & Economic Research, University of Essex, gave a fascinating talk on ‘Poverty and Material Well-being of LGBT elders’, somehow managing to make some very complicated statistic not only accessible but also enjoyable. Audience members gazed in avid fascinating and still wanted more at the end. The second speaker, Dr Martin Mitchell, NatCen Social Research presented on ‘Not just “a nice thing to do”: Marginalisation and hardship for LGBT older people in the context of austerity cuts.’

Noah spoke of recent research project on poverty and sexual orientation (constrained by the usual problems with representative sampling of a ‘hidden population’) which suggested significant material differences in later life for LGB individuals compared with heterosexual individuals, and between one another. A key feature was the suggestion that older lesbians were materially advantaged compared with both older heterosexual individuals and older gay men. Noah’s data – which he bravely presented, anticipating the response it would meet – were, not surprisingly, hotly contested by many of the lesbian members of the audience. They found the idea of older lesbian material advantage counter-intuitive. Discussions raised issues of: women’s relative lower earnings to men; women’s greater representation in (lower paid) public services work, especially care work; women (including lesbians!) taking time out of work to have children, and to perform other informal unpaid care work (including for parents and grandchildren); women being much more likely to be in part-time paid work (rather than full-time work) while also performing unpaid informal care work (1). Noah acknowledged the tensions provoked by the data, and plans on conducting further analyses. We look forward to hearing more!

Martin then spoke of the double-edged sword of austerity cuts. Older LGBT individuals are more likely to need support from those public and voluntary sector services (health and social care, informal and formal social support) which are currently subjected to drastic cuts in funding (2). Those cuts in services impose increased pressures on an already pressured cluster of minoritised individuals, meaning they have a greater need for services, at the very time when there are fewer services available. Lack of material and social resources have profound implications for the well-being of older LGBT individuals (3) (4).

Afternoon discussions returned to the issue of gender (again unsurprisingly) and to the need to continuously unpack the ‘LGBT’ acronym (5), to appreciate how older lesbians, gay men, bisexual women and men, and trans individuals are particularly affected by the material and social resource implications of later life. The plight of the Opening Doors London project, supporting 1,000 older LGBT individuals in the London area, and which has lost all of its funding, highlighted the lived realities of the implications of austerity cuts. Towards the end of the day two distinct responses to resourcing projects for older LGBT in later life: the neoliberal model of private and national state engagement; a more localist, communitarian approach involving local LGBT groups and local government. It was mentioned that in Australia and some parts of the USA, older LGBT have been designated a ‘special needs group’ (with all the complications of such a categorization) and as such are eligible for state funding for local projects.

Much food for thought, and much work to be done, but all-in-all, it was a stimulating and thought-provoking day, made so by the contributions of all who attended.

(1)    Arber, Sara (2006) ‘Gender and Later Life: Change, Choice and Constraints’. In J. Vincent, C. Phillipson and M. Downs (eds) The Futures of Old Age, pp. 54-61,London: Sage.

(2)     King, Andrew (2013) ‘Prepare for Impact? Reflecting on Knowledge Exchange Work to Improve Services for Older LGBT People in Times of Austerity.’ Social Policy and Society / FirstView Article / November 2013, pp 1 – 13 DOI: 10.1017/S1474746413000523, Published online: 19 November 2013

(3)    Fredriksen-Goldsen, et al (2013a) ‘Physical and Mental Health of Transgender Older Adults: An At-Risk and Underserved Population.’ The Gerontologist doi: 10.1093/geront/gnt021First published online: March 27, 2013

(4)    Fredriksen-Goldsen, Karen I., et al. (2013b). ‘The physical and mental health of lesbian, gay male, and bisexual (LGB) older adults: the role of key health indicators and risk and protective factors.’  The Gerontologist, 53(4):664-675.

(5)    Ward, Richard, Rivers, Ian. and Sutherland, Mike (eds) (2012). Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support.  London: Jessica Kingsley

 

 

 

Why dignity can’t be ‘delivered’.

By Liz Lloyd

For many years, dignity in care has been a core policy aim as well as the focus of commissions and working parties. In 2012 the UK’s Commission on Dignity in Care for Older People pointed out the breadth and depth of cultural change that would be required to secure dignified care for older people and argued that deep-seated age discrimination and stereotyping of older people were major barriers. The Commission took the view that to shift stereotypical views of old age it is necessary to show that not all older people are frail and dependent and, moreover, that older people evidently make a positive contribution to society through unpaid work and community activities. These are important points but do not add up to an adequate basis for shifting attitudes towards those who are frail and dependent. True, a cross-section of people aged over 70 will show varying levels of health and capacity for self-care but it is also true that everybody aged over 70 will at some point need care. Indeed, the same applies to all age groups although the need for care is increasingly postponed until old age. Thus, we need a different way of conceptualising dignity so that we do not always associate it with self-reliance but acknowledge its relevance in the context of dependency on others, because dependency is part of what it is to be human.

Dignity is a personal concept, involving individual identity and self-respect. The potential for a loss of personal dignity increases with age, as health declines and people live with and eventually die with or from a range of conditions. Falls, continence problems and loss of mobility, for example, affect individual self-respect in profound ways. But dignity is also a social concept, involving social and cultural practices, institutional systems and interpersonal behaviour. Personal and social meanings of dignity are strongly entwined. Importantly, in both personal and social meanings, dignity is relevant to those who provide care as well as those who receive it. The dignity of the care worker is enhanced when their job is done well and diminished when it is not, such as when a worker has insufficient time to attend to anything other than the older person’s basic functional needs. The economic and political contexts that prioritise constraints on public spending make it harder to overcome barriers to dignity in care for both the care worker and the older person.

To overcome the loss of dignity associated with declining health, older people typically make strenuous efforts to avoid becoming a burden on others.  But, at the same time, they need to adjust to their changing circumstances and learn to accept help. Striking the right balance between these twin obligations is a complex and deeply personal matter. People’s perceptions of how they wish to be supported are influenced by family ties, social and cultural background, migration experience and individual life histories. What might appear insignificant to a care provider might be deeply significant to the older person.

We should not underestimate the importance to personal dignity of the style of communication between front-line staff and older people. However, the complex issues faced by older people when health declines requires those in health and care services not simply to check their actions against a list of standards but to engage with the complexities of individual people’s lives. Understanding the impact of loss and change and helping people make the difficult decisions that follow can be an important basis for care that maintains dignity. Above all, this needs to be done not because we should behave well towards them but because frailty and dependency are part of us all.

Liz Lloyd

10th March 2014