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A CARE EXPERIENCED VIEWPOINT: What role should care experienced people play in transforming care systems?

By Elisha Mulvaney, MA Social Work, Lived Experience Expert and Dorothy Adams, secondee from the New Zealand government to the OECD

Introduction

In November last year, the Tilda Goldberg Centre for Social Work and Social Care, University of Bedfordshire and the OECD hosted a webinar ‘What role should care experienced people play in transforming care systems: The care experienced perspective’, the second in a series: ‘From Policy to Effective Implementation in Practice’, a collaboration between the Tilda Goldberg Centre for Social Work and Social Care and the OECD (http://oe.cd/care-leavers-2022). Duncan Dunlop, a care system reform specialist talks with three care experienced people, Thomas Carlton, Jonny Hoyle and Elisha Mulvaney about their perspectives of growing up, and now working in a system that, based on the outcomes care experienced people are achieving, is failing them. They reflect on what would make real change happen and what role care experienced people should play in that.

This Viewpoint builds on Duncan’s conversation with Thomas, Jonny and Elisha about why they’re working in social care, what they believe will change care, how we will know if change is happening, what role care experienced people can play and what the audience can do to change the trajectory. It further explores with Elisha, a Care Experienced activist and social worker, what changes in the care system she believes will have the greatest impact. Elisha has worked in Local Authority children’s care and has also been a youth worker and is currently working in the charity sector for care experienced young people. Elisha now campaigns to deliver wider systemic reform to the care system in England.

Why should care experienced people play a role in transforming care systems?

In a 2022 report Assisting Care Leavers: Time for Action, the OECD provided a range of good and promising practices in areas the evidence says will make the greatest positive difference to care experienced people’s outcomes, based on both the literature and from what OECD countries are learning through their own experiences (OECD, 2022).

One of those areas is involving care experienced young people in individual decisions and policies that shape their lives. The importance and value of doing this is reflected in the growing body of literature capturing care leavers’ voices. Involving young people in decisions that shape their lives can promote resilience and feeling able to plan and be in control (self-efficacy) and offer the opportunity to re-frame adverse circumstances and events (Stein, 2012). Further, listening to care experienced young people can elicit deeper insights into designing and administering out-of-home care (OECD, 2022).

Young people want to speak for themselves and to be heard. They want the opportunity to have input into the systems and structures that affect them. “With voice, young people can find the internal resources to use connection [i.e., an ongoing connection to someone who is important in their lives] and the external resources [and services] they have [access to]. Without voice, connection and resources remain untapped” (The Ontario Office of the Provincial Advocate for Children & Youth, 2012, pg.23).

Outcomes for care experienced people are not good enough

Duncan begins his conversation with Thomas, Jonny and Elisha by setting the scene – ‘’care doesn’t work’’. Despite significant state intervention (and investment) the life chances or outcomes for care experienced people haven’t improved [much]. Duncan provides statistics for Scotland that show 15% of looked after young people leave school with a higher-level qualification compared with 66% of their peers; 6% leave school to go to university compared to 40% of their peers. 45% of 5–17-year-olds were diagnosed with a mental health disorder compared with 9% of their peers. 40% of young people and 25% of adults in prison self-report as having previously been in care. Duncan points out these statistics could be from almost any country in the world, particularly countries in the global north.

Scotland’s statistics are borne out in the literature; as a group, care experienced people typically suffer poorer outcomes (OECD, 2022). While there is a lack of data on the long-term outcomes of people who were in care during their childhood and/or teenage years the data that do exist generally point towards worse life outcomes. Care experienced people tend to leave the education system earlier than their peers and are less likely to be employed or earn a salary equivalent to other people. Former youth-in-care are extremely over-represented among the homeless population and among teenage mothers. Having been in care is also associated with poorer mental health, higher incarceration rates and a higher suicide rate (OECD, 2022).

Duncan observes that care has struggled to change, and poses the question, why is that? There has been a lot of noise and talk about things changing but care systems now are not much different to what they were in the 19th century; at best, reforms over time have been incremental. Further, we’ve been asking care experienced people – particularly children – for a long time what it is they want to change, and they have told us the same thing, for generations: listen to us, do care with us not to us, don’t stigmatise us, and perhaps most importantly of all, love us – we want to be loved.

What do young people say needs to change?

Listen to us

Article 12 of the UN Convention of the Rights of the Child states that every child has the right to express their views, feelings and wishes in all matters affecting them, and to have their views considered and taken seriously. Furthermore, Article 13 states children have a right to be given information, so that their views can be informed.

Feeling that you have a say in what happens to you promotes good mental health. Adolescents who see events as being largely outside their control have more emotional problems, especially when trying to cope with high levels of stress. Conversely, higher self-esteem and fewer psychological and emotional problems have been found in adolescents who feel that they can exert some control (Tangney et al., 2004; Nigg 2017).

10,000 voices, a research report exploring the views of children and young people (aged 4-18 years) in care in England about their well-being showed that while the majority (86%) felt included in decisions at least ‘sometimes’, a large number said they wanted more involvement, they wanted to feel their views were being taken seriously and that they were being listened to (Selwyn and Brieheim-Crookhall, 2022, pg.53):

What happens in my life is important. I don’t want workers to pick and choose what they share with me. Let me know everything that is being planned for my life.

Some young people felt they had no control over their lives with placements changing with no warning and decisions being made on their behalf without consultation. Many young people thought that even when they were asked for their views, it was tokenistic, that they were not really listened to or taken seriously. Furthermore, many young people felt they were not kept informed, with some wanting more input in decisions, especially court decisions (Selwyn and Brieheim-Crookhall, 2022, pg.55):

Why ask for my opinion when it is never taken into account!

As part of a project funded by the European Commission to develop a new approach to personalised services for people in vulnerable situations in Lithuania, the OECD held a workshop in 2022 with care experienced young people (and service providers) to better understand their experiences of transitioning from care and what would help to make the process better. While young people did not talk specifically about being listened to, they did talk about the challenge of not always having the information they needed or knowing where to turn when they had specific questions (OECD, 2023).

Do care with us, not to us

Duncan observed that ‘do care with us and not to us’ is a personal statement, young people are talking about their own journey. Can you talk to me about what matters to me and get this to work for me. Duncan points out there are 10,000 care systems in Scotland because there are around 10,000 kids in care; each child and young person is unique, they have their own story, their own pre-care and in-care experiences and will achieve different outcomes.

I have no control over my life. Social workers determine what’s going to happen in my life and when. Since I came into care, I have had no control over any aspects of my life. Social services control where I live, what I do and how I do it. I hate living in care (Selwyn and Brieheim-Crookhall, 2022, pg.54).

Don’t stigmatise us

Thomas, Jonny and Elisha all talked about stigma, commenting that there is a huge issue in the [care experienced] community around identity; the stigma and discrimination that comes with the label and the shame of not being loved by your birth family and being part of the care system. Young people in Lithuania identified stigma as a significant challenge providing many examples of discrimination, e.g., when looking for a job or housing, being paid less for unskilled work, or being employed without a contract. Service providers talked about the stigma they believe exists in educational institutions; care experienced young people are not encouraged to continue their education or to have professional ambitions (OECD, 2023).

We are currently preparing to leave care and are already living in apartments. For example, when someone in the neighbourhood plays loud music, the police are called directly for us. Even if we are not at home at all. We do not expect anything else (OECD, 2023, pg.159).

When you work, you are offered less than others, only to find out that others get more. Sometimes they try to turn you down, or not pay at all. We are gullible, we do not always get it right. It is good when a carer intercedes (OECD, 2023, pg.159).

Love us – we want to be loved

Children just want to be loved, not feel loved but be loved. A point Thomas, Jonny and Elisha returned to again and again is the importance of ensuring children and young people have at least one person in their lives who loves them; a loving relationship(s) that stands the test of time. “How are you going to love us?” This should be the underpinning principle of any system or family parenting a child.

Increasingly, the evidence emphasises the importance of social connections e.g., a caring and involved adult who supports a young person in a similar way to how a parent or caregiver might support their own child to transition to adulthood. Recent studies describing the lived experiences of care experienced young people during COVID-19 reinforced the importance of relationships and strong support networks. Support was a critical factor in care experienced young people negotiating COVID-19 challenges and while the support of professionals was valued, the support of family, friends and other non-professional contacts loomed larger (Gilligan, Brady and Cullen, 2022).

While the importance of relationships and strong support networks is well covered in the literature the idea of ensuring children and young people in care are loved – asking them who it is in their lives that they love and who loves them, less so (which Elisha reflects is curious given that social workers are trained in child development and understand on an evidential basis the essential nature and importance of love). 10,000 children and young people when asked about their carers spoke positively about carers who treated them the same as their own children and who made them feel loved and part of the family:

I love my nan and I never want to leave her side.

My foster family is very lovely. They love me and I love them (Selwyn and Brieheim-Crookhall, 2022, pg.20).

How should the care system respond?

Duncan poses a second question, if these are the messages we’re getting from children, how do we, as professionals respond to them? The conversation with Elisha starts here – how should the care system respond to what children and young people say – have been saying for a long time – needs to change. Elisha has worked in the English care system for five or six years and thinks outcomes have changed little in that time – certainly little has changed in the areas that matter. Having spent time in the system herself, Elisha now advocates for reform that will deliver life-long love for all care experienced people.

Elisha believes the biggest issue in the system is children needing to feel worthy of love; to be accepted for who they are. This is where change must start and when asked, Elisha is quick to respond that it is the social care workforce that can best affect this change – it is their job to ensure that the children and young people in their care have someone safe in their lives who loves them. These relationships should be protected and promoted.

So, what does love for a child in a professional system look like? While a good relationship between a child and their social worker is important it does not necessarily equal love. Elisha says the first question a social carer should always ask is who loves this child and who do they love? It may be a foster carer, an extended family member or a friend. While love will look different for everyone (and may come from more than one relationship as it did in Elisha’s case), Elisha describes some of the necessary characteristics, including a long-term relationship where the person is emotionally attuned to the child, has empathy for their lived experience, and a deep understanding of the child as a person. The person who loves them and they love should have or be supported to develop emotional intelligence and good communication skills so they can help the child to believe in their own worth and potential. There must be healthy boundaries, and high levels of empathy, affection, and support.

Elisha returns to her point about the critically important role of the workforce in affecting the change required. Elisha believes that currently there is a glossy veneer of care, and that the system faces an unexplored and inherent tension between its own professional boundaries, and its social positioning within the family home. For children who are care experienced, a professional system providing the day to day lived experience of a family, can mean that some aspects of emotional intimacy that exist in a healthy family, and are essential for healthy child development, are at risk of being missed. This means that essential components of healthy child developmental experiences, are also at risk of being missed.

Elisha says this tension in the system should not only to be confronted but the challenges it presents, embraced. ‘The unique role and privilege of raising children in care is a critical aspect of a social carer’s professional identity and should be a source of strength and resilience for the workforce. The parental aspect of raising children in care, and the need for loving lifelong relationships for children, must be present, for transformational change to occur. This is essential if the care system is to affect an improvement in its outcomes’.

There needs to be radical honesty about the relationship between a social carer and a child in their care. What would make the relationship better? Where are the blocks? Elisha talks about blocked care which describes a reactive parenting style focused on a child’s most adverse or negative traits. It happens when a carer is constantly stressed or overwhelmed, triggering their survival brain or limbic system to react. When this happens constantly, a preference for this ‘survival’ system can develop and the carer can become defensive and unable to empathise and maintain positive interactions with the child they are caring for (ACT Government, 2019).

Elisha maintains that the silent narrative of shame in the frontlines of the social care system about professionals being blocked in their care needs to be confronted and remedied. There needs to be a sense of safety for any professional to confront these feelings within themselves, and to have readily available support to rediscover their empathy for a child or young person; and to be able to ask for help for self-care. There needs to be a multifaceted and robust strategy around unblocking care in the child’s professional support network and ongoing supervision practices to ensure it is dealt with swiftly if it arises.

Furthermore, a management practice of proactively checking the quality of relationships between carers and children and young people should be introduced where it doesn’t currently exist. Again, carers need to feel safe to disclose when they are struggling in their care for a child. People and professionals fear being called out, and yet social workers are trained to challenge their own practice and should already be equipped to work in this way. Management and supervision are important tools for improving social care practice. Good supervision equips social workers to, for example, challenge and support foster carers to improve their practice, to think about how to help children to form attachments to school and friends, to ensure they are not subjected to discrimination, and to always ensure the children and young people in their care are experiencing love in their day to day lives.

Elisha introduces an idea she describes as ‘’trickle down shame’’. If workers are too ashamed or afraid to admit they are blocked in their care of a child and as a result love for that child is not present it is the child who suffers. They are the ones who experience the direct impact on their development and identity, which creates shame for them. They are also the ones with the least power to change the situation. If a child is experiencing multiple adults who are blocked in their care, what does this tell the child who is already stigmatised and feeling shamed for having care experience about being worthy of being loved?

Elisha draws upon her own experiences, and the experiences of so many of her care experienced friends, and the voices of young people she has worked with when she talks about how the shame that originates in the professional system trickles down to a child. This shame can also trickle down from multiple sources, further reinforcing a child’s negative experiences. Elisha maintains the social care system needs to remember that when a child comes into care, they are not a replacement for the child’s biological family, but rather, they are an extension of the child’s family. The system cannot escape the fact it is responsible for providing the day to day lived experience of being part of a family which has a direct impact on a child’s development; ensuring a child is loved is central to this.

So, what can we do? How can people reading this Viewpoint, or who listened in to the webinar – policy makers, social workers, care experienced people, researchers, students, and other professionals help? Jonny and Elisha both emphasise the stigma and discrimination that is rampant in society. Service providers in the Lithuanian workshops also talked about the stigma and discrimination that exists in institutions such as schools, which manifests in a lack of belief that the young people in their care have the potential to succeed (OECD, 2023). We need to say it out loud: this is not good enough. What do you want for your own kids? That should be the starting point.

Elisha maintains LANGUAGE is a key starting point for change; how do we talk about this? One way Elisha says professionals and others can help is by providing the language to talk about love – within the care system and publicly. “We need to start talking about love as a part of our professional role when raising children, as complicated and messy, imperfect and challenging as that discussion may be.” Academics, policy makers and other professionals can proactively lead the way, helping to normalize the language of love. If a child is living without love as part of their day-to-day existence this should be confronted and dealt with, it certainly should not be accepted. Elisha asks ‘’why is there professional silence around the questions ‘’is this child loved?’’, “does this child feel loved”, and “who does this child love?” They should be the first questions anyone involved in a child’s life asks.

Finally…

Duncan concludes the webinar with four takeaways: 1) critically reflect on how care experienced young people are involved in care system reform, 2) don’t collude, by which Duncan means, don’t silently accept or assume that busyness and investment equals progress, 3) how do we achieve public outrage about the outcomes children and young people who are or have been in the care system are experiencing – it is inconceivable today that you would accept the suffering of children – there are no words to describe the level of disgrace we should feel about this, and finally, 4) how will we, the webinar audience and people working in this field, contribute to the outrage and demand change and solutions?

This Viewpoint, we hope, contributes to building the outrage Duncan talks about as well as to the evidence base about what works to improve the lives of people with care experience. It focuses on the social care workforce, for two reasons: Firstly, this area is where Elisha firmly believes the greatest change can occur in terms of children and young people being loved. It is the role of social workers to ensure that children and young people in their care have at least one safe person in their lives who they love and who loves them.

Secondly, the role of the social care workforce does not appear as well covered in the literature as other areas the evidence says will make the greatest difference to the lives of care experienced people. There are of course many other equally important areas we could cover, for example addressing the critical role of, but seeming lack of basic living skills young people transitioning out of care systems have or how to address the issue of ‘labelling’ that contributes to the stigma that so many young people experience. A question Elisha struggles with is why, with a workforce trained in labels, discrimination and ‘’othering’’, we still label people according to their experiences. Instead of labelling the human maybe we could label the support pathway they need which would be just as simple to do. Perhaps these are topics for future Viewpoints.

References

ACT Government (2019), Blocked care: When stress gets too much (act.gov.au) – accessed 30 May 2024.

Gilligan, R., E. Brady and L. Cullen (2022), One More Adversity: The lived experience of care leavers in Ireland during the Covid-19 pandemic, School of Social Work & Social Policy, Trinity College Dublin, https://doi.org/10.25546/98279.

Nigg, Joel. (2016). Annual Research Review: On the relations among self-regulation, self-control, executive functioning, effortful control, cognitive control, impulsivity, risk-taking, and inhibition for developmental psychopathology. Journal of Child Psychology and Psychiatry. 58. DOI:10.1111/jcpp.12675

OECD (2022), Assisting Care Leavers: Time for Action, OECD Publishing, Paris, https://doi.org/10.1787/1939a9ec-en.

OECD (2023), Personalised Public Services for People in Vulnerable Situations in Lithuania: Towards a More Integrated Approach, OECD Publishing, Paris, https://doi.org/10.1787/e028d183-en.

Office of the Provincial Advocate for Children and Youth (2012), 25 is the New 21, Office of the Provincial Advocate for Children and Youth, Toronto, https://openpolicyontario.s3.amazonaws.com/uploads/2012/02/25istheNew21.pdf.

Selwyn, J. & Briheim-Crookall, L. (2022) 10,000 Voices: The views of children in care on their well-being, Coram Voice and the Rees Centre, University of Oxford.

Stein, M. (2012), Young people leaving care: supporting pathways to adulthood, Jessica Kingsley, London.

Tangney, June & Boone, Angie & Baumeister, Roy. (2018). High self-control predicts good adjustment, less pathology, better grades, and interpersonal success. DOI:10.4324/9781315175775-5.

Resources linked to the webinar series

Care Leavers, COVID-19 and Transitions from Care https://www.beds.ac.uk/goldbergcentre/research/goldberg-current-research/cctc/

Exploring Innovations in Transitions https://warwick.ac.uk/fac/soc/wbs/research/exit-study/

Appleton, P., (2024). What Matters and Who Matters to Young People Leaving Care A New Approach to Planning. Policy Press. 1447368339. 9781447368335. https://policy.bristoluniversitypress.co.uk/living-on-the-edge – new ‘INTRAC’ book – free to download.

Young S., McKenzie M., Omre C., Schjelderup L., Walker S. ‘Warm Eyes’, ‘Warm Breath’, ‘Heart Warmth’: Using Aroha (Love) and Warmth to Reconceptualise and Work towards Best Interests in Child Protection. Social Sciences. 2020; 9(4):54. https://doi.org/10.3390/socsci9040054.

Adams, D., and H. Hakonarson (2024), “An integrated approach to service delivery for people with multiple and complex needs”, OECD Social, Employment and Migration Working Papers, No. 305, OECD Publishing, Paris, https://doi.org/10.1787/d837a06a-en.

Webinar series

More information about the OECD webinar series: “From Policy to Effective Implementation in Practice” including recordings of the webinars to date can be found here: http://oe.cd/care-leavers-2022.