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.

‘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.

 

Rethinking the Care Needs of Older Homeless People

by Rachel Barken and Amanda Grenier

The care needs of older adults experiencing physical and cognitive decline generate much attention in political, popular, and academic debates. Yet, particular subgroups of the older population are often overlooked. Such is the case for older homeless people, whose numbers are increasing across Canada and internationally. Older homelessness is also largely invisible in academic study, although interest is beginning to turn in this direction. Few gerontological works focus on homelessness, and studies on homelessness are often organized around earlier parts of the life course (Crane & Warnes, 2005; McDonald, Dergal, & Cleghorn, 2007). As a result, we know little about older homeless adults’ needs for care.

Our research project, “Homelessness in Late life: Growing Old on the Streets, in Shelters, and Long-term Care” explores the challenges older homelessness brings for aging societies as a whole and for service providers working in housing, shelter and long-term care. It involves a critical policy analysis; qualitative interviews with service providers and older homeless people; and participant observation in homeless shelters in Montreal, Quebec. This blog reports preliminary results from interviews with 15 service providers working with older homeless people. Interviews revealed three findings relevant to the challenges and contradictions of later life homelessness: (1) the need to adapt current approaches to homelessness to better accommodate older people, (2) the need to develop and sustain affordable housing across the life course, and (3) the inherent emotional conflicts and contradictions associated with homelessness in late life.

First, homelessness tends to be approached as a rupture in the life course requiring an emergency response. Support services are often provided in reaction to a fixed event, with the aim of reconnecting people with work or housing.  Interviews with service providers, though, reveal that older homelessness is often the result of marginal and precarious positions over time. The combined implications of social marginalization and older age means that traditional solutions based on work and housing are less able to ‘fix’ the problem of older homelessness. A deeper understanding of the interconnected individual and structural forces leading to later life homelessness is necessary.

Second, older people are caught between various housing and long-term care models. Housing options for older homeless adults in Canada include affordable housing units, alternative housing models, emergency shelters, and residential and long-term care facilities. Yet there is often a disjuncture between housing policies and practices on the one hand, and older homeless adults’ experiences, needs, and abilities on the other. Older people may need to compete against younger groups for subsidised housing. Pensions provide a certain level of income, but this does not address the shortage in supported housing options. Add to this that shelters or rooming houses are not intended as spaces to grow old. They are not adapted to changes in mobility and certainly do not qualify as ‘home’. Long-term care is also often inaccessible to older homeless people. They either cannot afford long-term care, or their needs cannot easily be accommodated in institutional environments.

Our third finding is perhaps most interesting to the debates circulating on this blog. Although workers do not necessarily name it as such, their interviews convey emotional, moral, and ethical conflicts around service priorities, personal associations, and expectations of aging. Their comments that one is ‘not expected to be homeless in later life’ poignantly articulate the conflicts that they experience with regards to aging and marginalisation and a profound helplessness given the lack of service options available for older homeless people.

In sum, homelessness rarely figures in to discussions of later life care. This leaves us with few directives when attempting to care for older homelessness people. We suggest that a life course perspective could be fruitfully applied to understand major pathways into homelessness, particularly risk factors and trigger events, and their prevalence across the life course. With this in place, it is necessary to design housing and care options that suit older homeless people’s diverse needs, abilities, and interests. Finally, it is urgent for discussions of later life care to address the realities of homelessness in particular, and social marginalization more generally. Our project, grounded in empirical data, seeks to generate knowledge that will enable policymakers and practitioners to account for homelessness in their responses to later life care.

References:

Crane, M., & Warnes, A. (2005). Responding to the needs of older homeless people.         Innovation: The European Journal of Social Science Research, 18(2), 137-152.

McDonald, L., Dergal, J., & Cleghorn, L. (2007). Living on the margins: Older homeless    adults in Toronto. Journal of Gerontological Social Work, 49(1-2), 19-46.

* The results discussed in this blog are part of an ongoing study being carried out at the Old Brewery Mission in Montreal, and funded by the Social Sciences and Humanities Research Council of Canada: Homelessness in Late Life: Growing Old on the Streets, in Shelters and Long-term Care: Amanda Grenier (PI), Tamara Sussman, David Rothwell and Jean-Pierre Lavoie.

Amanda Grenier, PhD, is Director of the Gilbrea Centre for the Studies of Aging, Gilbrea Chair in Aging and Mental Health, and Associate Professor in Health, Aging and Society at McMaster University, Canada.

Rachel Barken is a doctoral candidate in the Department of Sociology at McMaster University and Research Assistant on the Homelessness in Late Life research project.

Workplace personal assistants – what do we need to know?

While I finished my PhD, I worked as a personal assistant (PA) for a physically disabled woman. At first I worked evenings in her home, but later I switched roles and accompanied her to work.

I was surprised to find how different the role was. At home my job had been roughly how you might imagine a more traditional ‘care assistant’ job – largely making food and household chores. But as a ‘workplace PA’ I was taking notes in meetings, filing, and working on complex spreadsheets and reports.

I was always with my employer, of course, and she gave step by step instructions if needed, but the days went more smoothly because I knew how to use a spreadsheet, and could judge what parts of meetings were important enough to write down.

It was an interesting experience, and one I’ve continued to reflect on since.

I was at work, but within my employer’s workplace. My contract and confidentiality agreement were with her, not her employer. If I was late, that made her late through no fault of her own. My behaviour and appearance reflected on her, and if I had been untidy or rude to her colleagues she would have felt responsible.

My employer’s colleagues were used to having her PAs around, but other people seemed unsure about how to react to me. Some would acknowledge my presence, offering me tea (always welcome), asking my name to write in minutes (unnecessary), and trying to include me in discussions in meetings (inappropriate). Others would focus on my employer (good) and act as if I wasn’t there at all (not so good).

I haven’t seen much written about the professional role of workplace PAs who support a physically disabled person. Having spent several years as a workplace PA myself, it seemed to me that my role was very different to someone supporting a learning disabled person or someone with mental health issues at work.

It is likely that more PAs will be needed as people take increasing control over their own support arrangements through both social care and workplace schemes. We need to know more about the current and potential roles of the workplace PA. That’s the only way we can provide appropriate support to workplace PAs themselves, the disabled people who employ them, and to their employers.

What do we already know?

What do we already know about workplace PAs? Not much. The Department of Health’s Social care workforce research initiative (Qureshi and McNay, 2011) acknowledged the current lack of information about PAs more generally, and identified a need to collect routine information such as numbers and levels of pay.

Similarly, the Framework for supporting personal assistants working in adult social care (DH, 2011) recognised the need for a better understanding of personal assistant working, including the range of tasks carried out by PAs, particularly given that they are likely to be working in isolation with little opportunity for reflection and professional development.

There is some mention in such work of supporting people to take an active part in their communities, including access to education and employment. But there is very little, if anything, written specifically about PAs supporting people at work.

Employment rates of disabled people are relatively low. In 2012, only 46.3% of working age disabled people were in employment, compared to 76.4% of working age non-disabled people (Office for Disability Issues). In 2010, young disabled people were twice as likely to be not in employment, education or training as non-disabled people of a similar age (Equality and Human Rights Commission, 2010).

If we are to meet disabled people’s employment aspirations, there must be appropriate support. For some this will include workplace PAs.

The Access to Work scheme is the primary mechanism for supporting disabled people in work at present. A recent review (Department for Work and Pensions, 2011) described this as ‘the government’s best kept secret’, and suggested demand had been kept low by lack of advertising. In April-December 2012, Access to Work granted 11,580 awards (out of a total of 33,180) to pay for support workers, but does not indicate how many of these were to physically disabled people.

Specific questions that need answers

If we are to improve support for workplace PAs, the people who employ them and their employers, then we need some specific information. I suggest some initial questions should include the following.

  • Numbers: How many physically disabled people in employment use a PA at work? How many workplace PAs are there?
  • Roles: What roles do workplace PAs have? If they also work as a home-based PA, what are the differences between the roles?
  • Payment: How much are workplace PAs paid, and where does the money to pay them come from?
  • Recruitment: How are workplace PAs recruited?
  • Career development: What is the employment background of workplace PAs (and do they consider themselves to be part of the ‘social care workforce’)? Do they consider being a workplace PA as a career, or a temporary job?
  • Issues and relationships: What issues have disabled people using PAs experienced at work (with PAs, colleagues, or employers)? How do workplace PAs find relationships with the disabled person, their colleagues, and others in the workplace? How do employers feel about having PAs in their workplace?

For disabled people, particularly those applying for their first jobs, knowing about the role of a workplace PA may encourage them to aspire to a job they may not have otherwise considered. For the organisations who support them, an understanding of the specific requirements of the job will help with recruitment and retention of suitable PAs.

It’s tempting to group workplace PAs with the rest of the social care workforce. But by doing so we risk planning for the recruitment of the same people through the same channels as we have always done. Workplace PAs aren’t necessarily paid with social care money, and while their work may include some personal care, it’s likely to include other specialist skills too. If we think only in terms of social care workers, we risk losing the expertise of people who may be perfect for the job, but who haven’t considered a social care career.

This is my initial attempt to get some of my musings about this written down. I’ll be developing my thoughts further over the next few months, not least about whether ‘workplace PA’ is the appropriate term. I’m interested in anything anyone has to say, either about their own experiences, or just thoughts on reading this. Please get in touch.

Jenni Brooks (jenni.brooks@york.ac.uk), Social Policy Research Unit, University of York

Twitter: @JenniBrooks

References

Department for Work and Pensions (2011) Getting in, staying in and getting on. Disability employment support fit for the future Accessed 1st Feb 2014

Department of Health (2011) Working for personalised care: a framework for supporting personal assistants working in adult social care Accessed 1st Feb 2014

Equality and Human Rights Commission (2010) How fair is Britain? The first triennial review Accessed 1st Feb 2014

Office for Disability Issues Disability facts and figures Accessed 1st Feb 2014

Qureshi, H. and McNay, M. (2011) Overview and synthesis: DH social care workforce research initiative 2007-2011 Accessed 1st Feb 2014

Rethinking Age in the Context of Care

Age- and stage-based assumptions are deeply embedded in care models and across care practices (Grenier, 2012). Whether care is used to refer broadly to a concept, institutional and organisational practices, or to denote relationships between families and older people, age and care are intricately intertwined. This entry focuses on care provision as a site from which to consider the intersections of age and care, and whether current models are in line with older people’s needs, and the new realities of ageing. Care is often linked with discourses of dependence, and paradoxically associated with potential in youth, and decline in age (see Irwin, 1995; Gullette, 2004). In late life, care tends to be delivered based on age eligibility. Yet, with age and what it ‘means to grow old’ an increasingly contested terrain, it is time to reconsider how age is enacted or sustained through care practices, and consider whether age-based models of care are suitable in the contemporary context.

 

A number of complexities exist when we begin to unpick age and the organisation of care. Formal care provision tends to be delivered through age-based segments of youth and old age. Few formal care services are life-long. Yet, the separation of the life course into age- and stage-based periods, age as an organising principle, and former notions of ageing as decline have been called into question (Featherstone and Hepworth, 1991; Hockey and James, 2003). At the level of personal experience, older people voice that ‘they are not old’ – that the age they are assigned contrasts with their experience and sense of self (see Kaufman, 1986; Bytheway, 2011). This has created a disjuncture where suggested models and expectations are concerned, as well as an alignment with new forms of ageing that emphasise success, health and well-being (see Katz, 2005). And while universal understandings of age are quickly being unravelled, undeniable needs for care amongst older people continue to exist. Older people may need care at various points across their life course as a result of disability or chronic illness, ‘frailty’ or end of life issues, and/or at particular marginalised locations (e.g., poverty, older homelessness). Yet, are such needs for care age-based?

 

We are at a crossroads where the age-based provision of care is concerned. Although reconfigurations of policy based on chronological age are underway (e.g., public pension), current examples focus on age adjustments, rather than on differing needs or alternate arrangements. Perhaps the retention of age is prudent considering the realities of ageism, reconfiguring age to reduce social expenditure, and the structured inequities in late life (see Gee and Gutman, 2000). However, the contemporary context calls for reflection at minimum. How do we catch up with emerging realities of aging and adjust the organisation of care accordingly? Should age be used to organise care services? If so, in what circumstances? If not, how can we assure that those in need are not further marginalised? Such questions represent a starting point from which to reconsider age-based models of care, question underlying assumptions, and reconfigure care practices so that they are more aligned with changing notions of age and contemporary care needs.

 

Amanda Grenier, PhD, Associate Professor, McMaster University

email: amanda.grenier@mcmaster.ca

twitter: @amanda__grenier

 

References:

Bytheway, B. (2011). Unmasking age: the significance of age for social research. Bristol: The Policy Press.

Featherstone, M., and Hepworth, M. (1991). ‘The mask of ageing and the postmodern lifecourse’ In M. Featherstone, M. Hepworth and A. Wernick (eds) Images of ageing, London: Routledge.

Gee, E. M., and Gutman, G. M. (2000). The overselling of population aging: apocalyptic demography, intergenerational challenges, and social policy, New York: Oxford University Press.

Grenier, A. (2012). Transitions and the lifecourse: challenging the constructions of ‘growing old‘. Bristol: Policy Press.

Gullette, M. M. (2004). Aged by culture, Chicago: University of Chicago Press.

Hockey, J., and James, A. (2003). Social identities across the lifecourse, Houndmills: Palgrave MacMillan.

Irwin, S. (1995). Rights of passage: social change and the transition from youth to adulthood,  London and Bristol: UCL Press.

Katz, S. (2005). Cultural aging: life course, lifestyle, and senior worlds, Peterborough, ON: Broadview Press.

Kaufman, S. (1986). The ageless self: sources of meaning in late life, Madison: University of Wisconsin Press.

 

Sexual identity and care home provision: some reflections on the research process

My colleagues and I at Swansea University have recently completed a mixed-methods study into the provision of inclusive care to older lesbian, gay and bisexual (LGB) people in residential and nursing care environments in Wales – an elongated title for saying, ‘how well are older LGB recognised and cared for in care homes?’ We know from the literature that heterosexism in residential care provision can mask the sexual health needs, diversity and desires of older LGB residents. Prior research from Australia and the United States has identified institutional and historical barriers that prevent older people ‘coming out’, or identifying as LGB to care providers (Barrett, 2008; Jackson, Johnson & Roberts, 2008; Knockel, Quam & Croghan, 2010; Tolley & Ranzijn, 2006). Our research was funded by the National Institute for Social Care and Health Research (NISCHR) and had a unique focus on Wales as a UK nation with devolved responsibility for providing health and social care to its citizens, including older people. Residential and nursing homes (private and local authority-owned) from across Wales took part. Two methods were used to gather staff perspectives on inclusive care —self-completed questionnaires (121 respondents), and focus groups with care staff and managers (5 groups) from 32 organisations. Other methods included: content analysis of Care and Social Services Inspectorate Wales (CSSIW) Inspection reports (383 reports) to identify content pertaining to sexuality, sexual health and LGB identities; and, semi-structured interviews with 29 older LGB-identifying adults about their hopes and expectations for future care. The final report is available online and provides an overview of the key findings and recommendations: http://www.swan.ac.uk/humanandhealthsciences/research/research-impact/lgb-residential-care-report/

What follows are some brief reflections on the process of involving care organisations in the research – reflective comments on the research process that do not always make the final edit of reports and papers but may help steer future research in this domain.

Willingness to participate and learn – We initially anticipated that seeking care home participation would be the biggest challenge in recruitment because of the politically-charged nature of the topic and our concern that staff and managers would interpret our research endeavours as a critical appraisal of their practice.  Instead, we were struck by the enthusiasm of staff and managers to participate. Using a random sampling method, we invited 51 organisations to participate with 19 declining. Most of these homes declined because of impeding closures that created logistical barriers to their involvement. For some staff groups, participation in a focus group was framed as an informal learning opportunity into an area that receives little time and attention, an unexpected but positive outcome. Across focus groups, there was general agreement of a ‘need to know more’ about sexual difference and LGB histories. Participating staff members conveyed an awareness of progressive shifts in legislation and social attitudes but in equal measures expressed a willingness to be more mindful of the sexual biographies of residents in their care.

Sexuality, dementia and everyday care – While our research focused on sexual identity and social inclusion, a connected and equally pertinent topic that frequently emerged in focus groups was the complexity of balancing issues of sexual expression, dementia and informed consent. Staff elaborated on the challenges of negotiating sexual relationships and intimate contact between residents with declining mental capacity alongside responding to the often divided opinions of family members. Listening to these accounts of complex care deepened our appreciation for staff members’ commitment to respecting the rights and choices of residents in their care and to continually ‘do the right thing’. It also brought home the ethical complexity of providing care in these settings for employees who were in receipt of a low financial reward just above the minimal wage with little professional recognition.

Missing voices from the research – Staff views and accounts conveyed through the research represent predominantly White perspectives. The majority of participating staff and mangers were white, heterosexual women born in Wales and of mainly Christian background. This clearly did not match our observations of staffing groups when entering homes – we noticed many participating homes employed staff from black and ethnically diverse groups, including individuals from African and Asian migrant communities. We were limited to the staff available to speak to us between rotating shifts and group membership was often facilitated by senior staff members operating as ‘gatekeepers’ for their organisations. It is difficult to pinpoint whether individual staff from migrant and ethnically diverse communities opted not to participate for personal or religious reasons or whether they were not approached to participate; we can only speculate about possible barriers to participation. Ethical requirements prevented us from actively approaching individual staff to participate. Finally, we did not anticipate the eagerness of ancillary staff members (such as cleaners, kitchen staff etc.) to have a say in the research. It became increasingly clear that their various duties involved regular contact with residents and their views were of equal importance in the provision of inclusive care. We confess to underestimating the validity and contribution of these staff members’ perspectives; food for thought for future research.

I hope the above reflections are of some benefit to other researchers and practitioners engaged in research in an area of increasing interest. Putting these observations to paper has been valuable for me in capturing the often sidelined messages about research into organisations providing care to others.

Barrett, C. (2008). My People: A project exploring the experiences of gay, lesbian, bisexual, transgender and intersex seniors in aged-care services Retrieved 16th October 2009, from http://www.matrixguildvic.org.au/MyPeopleReport2008.pdf

Jackson, N.C., Johnson, M.J. & Roberts, R. (2008). The potential impact of discrimination: fears of older gays, lesbians, bisexuals and transgender individuals living in small- to moderate-sized cities on long-term health care. Journal of Homosexuality, 54(3), 325-339.

Knockel, K.A., Quam, J.K. & Corghan, C.F. (2011). Are Old Lesbian and Gay People Well Served? Understanding the Perceptions, Preparation, and Experiences of Aging Services Providers. Journal of Applied Gerontology, 30(3), 370-389.

Tolley, C. & Ranzijn, R. (2006). Predictors of heteronormativity in residential aged care facilities. Australasian Journal on Ageing, 25(4), 209-214.

About the author: Paul Willis is Senior Lecturer in social work in the College of Human and Health Sciences at Swansea University. His research interests include ageing, sexuality and social care; wellbeing and identity construction of LGBT youth; and social inclusion in organisations. Email: P.B.Willis@swansea.ac.uk