Developing a universal definition of care experience: consultation analysis

Executive Summary

A public consultation on Developing a Universal Definition of ‘Care Experience’ was held between 9 October 2024 and 31 January 2025. Across 10 questions, the consultation sought views on the need for a universal definition of ‘care experience’ and about any potential impacts of introducing a definition. It also asked for opinions on the language currently used to speak about care experience and how it can be improved. Alongside other consultations and engagement events held in 2024, this consultation is one step in progressing recommendations to keep The Promise.

In total, 142 consultation responses were received, with 71 from individuals and 71 from organisations. Among organisations, 41 (58%) had duties as corporate parents under the Children and Young People (Scotland) Act 2014, which equates to 29% of all respondents. The Scottish Government also held eight stakeholder events from November 2024 to January 2025. Attendees included local authorities, health boards, third-sector organisations, membership bodies, and higher and further education organisations

Respondents with detailed knowledge and lived experience of care participated in the consultation, sharing their time and views on the proposal to create a universal definition of care and suggest any possible impacts. This report provides an analysis of the consultation responses and notes from stakeholder events.

Potential impacts of a universal definition of ‘care experience’

Respondents were overwhelmingly supportive of creating a universal definition of ‘care experience’, with 80% of all respondents agreeing that a definition is needed to describe care experience; 54% strongly agreed and 27% agreed. Many of the remaining respondents were neutral (11%), while 4% disagreed and 1% strongly disagreed. Individuals were more likely than organisations to agree (85% and 74%, respectively) and strongly agree (66% and 42%, respectively) with the need for a universal definition.

While many respondents supported the universal definition, they provided further comments about the possible advantages and disadvantages of introducing one. The likely advantages of a universal definition were that more people may receive the support they need and that access to support may be easier as pathways are made clearer. Other advantages of a universal definition included improved consistency across agencies and service providers as a single, inclusive definition could clarify eligibility throughout Scotland and across service types. Respondents also emphasised that the universal definition could assist with research and data collection, and some felt that it might enable the inclusion of ‘care experience’ in adjustments to the Equality Act 2010.

Conversely, the adverse impact a universal definition may have on resources, including budgets, service provision and staffing, was mentioned by many respondents. Many expressed the view that some people with care experience may not like a universal definition or choose not to identify with it. Concerns about implementing a universal definition were raised by several respondents, such as a lack of consultation with people with lived experience, a slow rollout impacting services, and confusing communication. There was also a request for clarity on the impact of a universal definition on current statutory support for people who are ‘care leavers’ or considered to be ‘looked after’.

In some cases, respondents disagreed about the impact of a universal definition, highlighting the complexity around its implementation and use. For example, many thought that a new universal definition would provide more equitable access to services, but there were also many who had concerns that an overly rigid definition or a one-size-fits-all approach may end up excluding some people or act as a barrier to service use. Many respondents noted that the universal definition may help with stigma around care, yet many also raised concerns that a universal definition could create more stigma if the language being used is not appropriate. Consulting people with lived experience was one suggestion for ensuring the definition considers the varied experiences of care.

Views on existing support for children and young people

Organisations, particularly corporate parents, acknowledged the usefulness of the terms ‘care leaver’ and ‘looked after’. However, many also felt that the terms could be exclusionary to some who may still need assistance, did not reflect the lived realities of people in those groups, and could be confusing both for those with lived experience and practitioners who provide support.

The potential scope of a universal definition of ‘care experience’

The consultation paper provided respondents with a list of care experiences and asked which should be included in the universal definition. This included experiences of being looked after at home, kinship care (both looked after children and non-looked after children), foster care, residential care, residential special school, supported accommodation, secure care and adoption.

Overall, at least two thirds of all respondents indicated that each of the experiences presented in the consultation paper should be included in a universal definition. This ranged from 87% who selected the inclusion of foster care and residential care, followed by 85% for secure care, down to 68% who supported the inclusion of adoption. A broadly similar pattern of views was evident among both individuals and organisations, though organisations tended to be slightly less likely to select several of the options compared to individuals, except for looked after at home and adoption

Several respondents suggested including unaccompanied asylum-seeking children in a definition. Other experiences recommended by a few respondents for inclusion included any child who has been on the child protection register, children in emergency foster care and children in respite care. A few organisations noted experiences they felt should not be included in the universal definition. These responses focussed on the distinction of whether state support was already provided or whether the young person was subject to a compulsory supervision order. There was concern that available funding and resourcing may be overstretched if there were not some limits to support.

Several respondents reiterated the need for a universal definition to be inclusive and to reflect diverse experiences by creating a wide definition of care experience. Some called for the language and phrasing of a universal definition to be clear, inclusive, positive, straightforward, simple, enabling, and understandable, focusing on individuals. Some respondents noted the need to consider how a universal definition interacts with or impacts existing or future legislation, policy, and legal definitions, or requested additional information or clarity about the proposals.

Wider language relating to care

Respondents were asked for their views on the existing language of care. Many felt that the language currently used could be unclear or inconsistent, describing it as confusing, complicated, and overly jargonistic. Others expressed the view that existing terms were deficit-based, exacerbating low self-esteem, creating anxiety and a lack of willingness to disclose information. Several respondents also thought that the language used could create barriers between families and the care system or between children in the care system and their birth families.

Respondents reiterated the importance of consulting people with lived experience about any new language and terminology. In addition to listening to those with lived experience, some respondents advocated for this group’s views to be amplified or prioritised in decisions around language use. Others highlighted the need for greater social education to assist in shifting cultural views around care. The importance of avoiding oversimplification was mentioned throughout the consultation, particularly regarding the nuance and detail that were felt to be needed to organise legal frameworks and legislative support. Several noted the importance of updating any written material, guidance or frameworks as new language is developed to aid the education of practitioners and to help ensure there is consistency in how language is used throughout Scotland. The importance of regularly reviewing the language used was also noted by some.

Respondents provided examples of good practice, highlighting a range of initiatives that engage people with lived experience and initiatives that focus on awareness-raising. They also mentioned initiatives that focus on changing language, particularly written material, and successful partnerships and collaborative approaches.

Comments were made by many respondents on how updated language could be positively framed or promoted. These respondents recommended using more positive language and words perceived as strengths-focused, warm, inclusive, empowering, and accessible. They felt language change should reflect people's circumstances and lived experiences while avoiding being patronising, stigmatising, or dehumanising. Several respondents also expressed the view that language should be less formal and professionalised e.g. use Plain English, avoid acronyms and be accessible to those with care experience. This was felt important to help avoid stigma and discrimination.

Conclusions

Support for the proposed creation of a universal definition was high, with respondents highlighting the advantages of a universal definition, such as increased eligibility, consistency in practice and reduced stigma. Others raised some concerns, such as a lack of resources, including staffing and funding. Throughout the consultation, respondents emphasised the importance of consulting with people with lived experience, whether that was regarding the definition and its potential benefits or impacts, on any language changes, and the need to ensure that any new definition is non-stigmatising and inclusive.