The Independent Inquiry into Child Sexual Abuse (“IICSA”) published its final report with 20 Recommendations on 22nd October 2022. The Inquiry opened in 2015. The report was the culmination of 725 witnesses during 325 days of public hearings, hearing from over 6,000 victims and survivors of child sexual abuse, and the contents of 52 separate reports. The report was therefore well researched and evidenced, and was not a hurried summary on the back of a cigarette packet.
The Response of the Home Office to the Report
IICSA was firm in its insistence that the Government respond within 6 months. In April this year, the government explained that due to the Local Elections it would not be able to respond until May. The Response was finally published on 22nd May 2023. To read the full response click here
The report adopts 18 out of the 20 recommendations, but some of the responses are firmer than others. Whereas a firm commitment to bring in changes is made in relation to some recommendations, consultations with a commitment are made in relation to others. I have copied and pasted the table appearing in the report below
Access to Care Records (IICSA Report)
IICSA’s Report was very helpful in that it made exactly the type of recommendations that we have been advocating in the Campaign Group namely minimal redaction, avoid over-cautious deletion of 3rd Party data, provide support to Care Leavers when accessing their records, adhere to the statutory time limits if possible for disclosure, introduce legislation to make the retention of care records 75 years etc.
Home Office Reaction
The reaction of the Home Office was disappointing in that it agreed with the recommendation, but then passed the buck to the Information Commissioner’s Office (“ICO”) to provide enhanced guidance.
To be fair we were promised, as a Group, enhanced guidance some years ago at a meeting at the MIRRA Symposium to which the then head of the ICO, Elizabeth Denham CBE gave a Keynote Speech.
This is an extract from the recommendation
|17 ||A code of practice for access to|
records pertaining to child
|We accept the importance of access to records.|
We will engage with the Information
Commissioner’s Office on implementing this
Nonetheless there was no mention of the proposed legislation we suggested as long ago as 2013 in the House of Lords –
It shall be a defence to any allegation of unlawful disclosure of data under the Data Protection Act by the data controller, if it can be shown that the data controller has made a reasonable examination of the data and has satisfied himself as to the need to disclose data and identities of individuals whose consent has not been obtained under section 7(4) of the Act having regard to the needs of the care leaver as set out elsewhere in this Act.Hansard 14th October 2013
We discovered, when conducting round tables with different Local Authorities that there was widespread disagreement about what should, and should not be redacted from Care Records before disclosure to a Care Leaver, with some taking a liberal, and others taking a cautious approach.
Action has been taken against SEVEN organisations who failed in their duty to respond to information access requests.
The Information Commissioner’s Office (ICO) has taken action against seven organisations who have failed to respond to the public when asked for personal information held about them, known as a Subject Access Request (SAR).
To read the story on the ICO website and find out which organisations were at fault click this link.
The Department for Education set up in July 2022 a National Implementation Board as part of the government’s response to the Care Review. At the time of writing this post, the current Prime Minister has not appointed a children’s minister but we assume this person will chair the Board. The Children’s Commissioner, together with the current president of the Association of Directors of Children’s Services, are included among the board members. The DfE has said that the board will have three additional members with direct experience of the care system, to be appointed ahead of the first full meeting in the autumn. Josh MacAlister has been given a contract to advise on the implementation of the review that he led as Chair. The previous administration said it would report on implementation proposals before the end of the year: however, it is possible that will now slip over into 2023.
Our colleagues in the Care Leavers Association (CLA) have commented on the review and we endorse their views. CLA says whilst welcoming that the review proposes the right to support for care leavers accessing their care files should be lifelong, this should not been seen through the lens of mental health issues alone. The right of care leavers to have access to their care records must sit alongside a life long duty on local authorities to deliver lifelong care for their population of care experienced adults.
The Care Review Report at p173 discusses the issue under the heading ‘Provision of Mental Health Support to Care Leavers over 25 Accessing their Care Files’. Both ACRCG and CLA strongly believe that post care support should not be restricted to ‘mental health’ concerns, with its potential for stigmatising care leavers. In our experience, in the vast majority of situations, adult care leavers simply need advice, follow-up support and guidance that is unrelated to any mental health issues. In fact, mental health should not be listed as a reason for providing support as it reinforces negative pathways to access support services and, in effect, directs the care leaver away from the local authority and into health services.
There are many more issues – for example, searching for knowledge about family connections,
identity and simple fact-finding – that merit support far more than alleged mental health concerns.
Such concerns have, historically, been used as a reason for to deny or restrict access to case
records either completely or to justify severe and unnecessary redaction. This ‘stereotyping’ of care
experienced adults who have the legal right to find out what personal data about them is on care
records is at best unhelpful and, at worst, yet another way of marginalising the rights of care
What is actually required?
The 2014 revision of the Children Act 1989 guidance and regulations (Vol.3: planning transition to adulthood for care leavers’) makes clear (pp.37-43) what care leavers up to the age of 25 can expect and are entitled to. At the heart of this guidance is the clear message that “local authorities should provide services that consider the welfare of the care leaver, taking into account the implications of the decisions and actions for the care leaver and anyone else involved.” (p.39). But this guidance has its limitations.
ACRCG working with the CLA was instrumental in achieving a significant revision to the guidance and, at the time, was disappointed that, for legal reasons – this revision arising from amendments to children’s legislation – such guidance could not be extended to care leavers over the age of 25. However, the document clearly expects “the principles of good practice on accessing records to apply to any care leaver regardless of age”. In our experience, local authorities seem to be unaware of this guidance and, likewise, Ofsted does not see this as a performance standard when inspecting local authority practice and compliance.
So what does ACRCG and CLA say is now required? We believe that the Care Review missed an opportunity to recommend that the statutory guidance should be the basis for adult legislation that puts support in accessing care records at the heart of the duty on a local authority to set out its lifelong support offer. This support is so much more than a ‘mental health’ issue.
Alongside this, guidance should address the issue of the redaction of care records, which arises from the records coming within the remit of data protection legislation. This legislation has been helpful in ensuring access in recent decades. However, it is unsuited to the complex nature of care files. Frequent – and frequently excessive – redaction of data on care files causes delay in releasing data and a great deal of unnecessary distress to many care experience people seeking to make sense of their background, identity and experiences in care. These fundamental needs are far more important to the majority of care experienced adults who want access to their files.
The Care Review did not address the failure of local authorities to address the Article 8 rights of care experienced adults. Local authorities do not give sufficient weight to their legal duty under Article 8 of the Human Rights Act 1998 to ensure that decisions made when replying to a Subject Access Request [SAR] properly take into account the right of respect to family life that the person making the SAR has. Too much weight is given to third party privacy rights and local authorities too often exercise their discretion to share information without consent in a way that does not address the rights of the care experienced adult.
What is needed now?
For this reason, ACRCG and CLA are seeking firstly an amendment to current data protection laws to create a ‘defence’ of ‘justifiable and reasonable’ sharing of personal data without the consent of the person to whom the data belongs. Secondly, we continue to argue that there is a responsibility on the State to legislate for dedicated access rights together with guaranteed support consistent with the role the State had when it intervened in that person’s family life creating a life long alteration to their family life and their family connections.
The Care Leavers Association and the Access to Care Records Campaign Group worked together on a briefing document for the Board of the Experts by Experience members about the problems and impact of the current ‘care-less’ system when a care experienced adult asks a local authority for information from their care records. The members of this Board are tasked with ensuring that the Chair of the Care Review, Josh McAllister, takes into account throughout the enquiry and in its findings, the lived experiences of children, young people and care experienced adults.
The link to this group is here
Our briefing document is here
ACRCG says the law does not work for adult care leavers asking for their care records.
We have made a submission to the Law Commission’s 14th Programme highlighting the need to change the present law.
The Law Commission will decide what to include in its programme in early 2022
Our submissions is available on our Resources Page here
The Law Commission is an independent body which reviews current law and make recommendations for improvements and reform to Parliament. It is considering whether to include in its 14th programme a review of the law about identity and the barriers people experience when trying to find out about their origins and family connections.
We are deeply sad to announce that Darren Coyne, an irreplaceable founder member of the ACRCG, has unexpectedly died on 25 May 2021.
Darren was a fearless activist and passionate about improving the rights of adult care leavers to know about their time in care and their family connections. He worked tirelessly to identify and overcome the deficits, barriers and ‘carelessness’ of the system and its impact on persons asking to see their care records.
He was passionate in speaking out about the misuse and misunderstandings of data protection laws to deny people their right to know their family connections There are many care leavers who will have known Darren because of the support he gave them when, sometimes in very difficult and challenging circumstances, they had asked to see their care files, working with them to make ‘narrative sense’ of their time in care.
Darren spoke passionately and lucidly to everyone about the impact that being denied knowledge and memories of time in the care system had on his own and other people’s life journeys. He spoke persuasively to policy and law makers, academics, prison governors, local authority and voluntary sector case workers preparing files: he spoke at conferences, he worked with colleagues in research projects, he organised seminars and workshops, he went to where people needed his assistance, his advocacy and his knowledge. He went way beyond doing this work as a
‘job’: it was his mission. And, central to his mission, was the principle of working in partnership with all care leavers, giving emotional and mentoring support. The Care Leavers Association has lost a valuable colleague.
Recently, Darren made a podcast with John-George Nicholson for Research in Practice: we uploaded it to our website. Please take time to listen to Darren and John-George: it tells us so much about the experiences of care leavers reading their case records so succinctly.
We owe it now to Darren to keep steady in our advocacy work with care leavers to establish a much fairer framework of their rights to their family story. That is what Darren would expect us to do: to go forward fearlessly.
We offer our condolences to his daughter, his family and friends and to care leavers who have lost a true supporter and advocate and to his colleagues at Care Leavers Association and colleagues in the various projects Darren was involved with.
The UK Governmen,t as promised in its most recent election Manifesto, has set up a Review of the Human Rights Act. Its focus is how does the Act work in courtrooms, and the relationship between government, parliament and the courts.
At the same time, Parliament’s Joint Committee on Human Rights called for brief evidence from across the sector to highlight ‘everyday ways’ in which the HRA has been helpful in pushing forward the rights of citizens. We believe that Article 8 which requires public bodies to respect family life is an important right for adult care leavers.
The Access to Records Campaign Croup’s submission to the Joint Committee is set out below. We agreed that the Committee can publish our submission and send it as evidence to the Independent Review.
We want our contribution to push forward on the campaign to get specific legislation outside of the current data protection law to ensure that the rights of adult care leavers to knowledge about their time in care and their family connections are properly acknowledged.
Submission to JCHR on behalf of the Access to Care Records Campaign Group
Who we are
The Access to Care Records Campaign Group works alongside adult care leavers who are seeking to make sense of fragmented memories of growing up in the care of the State. Currently, the only way an adult care leaver can get a copy of their case records is by making a Subject Access Request under the Data Protection Act 2018. For many adult care leavers this process is not an effective way of getting information about their family and their time in State care.
Why we are making a submission
We see no sound reason to alter the Human Rights Act 1998. The Act [HRA] is and must continue to be a central legal resource for individuals marginalised by the State to redress the imbalance in power between them and the State and the consequence of its actions which have life long impact on their identity and their understanding of their origins. It is essential that the courts continue to have the power to rectify actions by public authorities which fali to take into account their duties under the HRA.
Why Articles 6 and 8 are important to adult care leavers
Whilst the Data Protection Act 2018 may, if files have not been carelessly lost or damaged or in fact have few details, enable the adult care leaver to have information about themselves from their case records, often local authorities and other care organisations, are reluctant to exercise their discretion to provide third party information from these records without consent. This defensive practice means that an adult care leaver is too often not able to make narrative sense of who they are and who their family consists of. This clash between the dual rights of respect for an individual’s privacy and the rights of the adult care leaver to know about their family life results in an outcome where much of the key information they are seeking is redacted. There is limited recourse to the Information Commissioner’s Office. The court is, however, the last resort for enforcing rights and Article 6 and Article 8 are key rights for a person who has been removed from their family of origin into the care of the State. And, too often, the State has been a ‘care-less’ parent.
Working with adult care leavers seeking their care records
Social workers and other child welfare professionals embrace the HRA as it enables them to ensure best practice in respecting the rights of an individual and their rights to experience family life and fair process. They know and welcome that they are accountable to the courts for ensuring a rights based professional practice when, at times, the interests of bureaucratic structures within a public authority tend to march in contradiction to the standards of their professional practice. The HRA is a significant and powerful force for reinforcing a practice culture of respect for human rights. Its enforcement at every level in the justice system is critical.
The structure and philosophy of the HRA and its mechanism of enforcement is a powerful tool for advocacy whilst working in partnership with adult care leavers who are consistently marginalised by the system which had responsibility for their care when they were children and young people. Section 3 of the HRA is critical to ensuring the overarching impact of a rights based approach to the interpretation of all legislation, including the Data Protection Act 2018 as well as social care legislation.
Deficits in the independent Review Enquiry
We are submitting this response to the Joint Committee on Human Rights because we consider that the Terms of Reference and the questions of the Review Enquiry are drawn too narrowly to enable campaigning and community advocacy groups to set out effectively how important and central this Act has been to our practice during the 20 years since its implementation. The focus of the current Review is about how the courts have interpreted and implemented the HRA.
What Access to Care Records Campaign Group wants
ACRCG is seeking to achieve legislation which takes the rights of an adult care leaver to their personal and family history outside of data protection legislation and process and replaces the present legal route with a dedicated and more empathetic legislative framework which addresses their unique experiences and rights to knowledge about their family life. For campaigning groups such as ours, the HRA is coherent and effective legislation and a key tenet of partnership with marginalised adult care leavers seeking redress from too frequently the neglectful care of the State.
Darren Coyne of the Care Leavers Association and a member of our Campaign Group and John-george Nicholson share their personal stories of accessing their care files as adults. Both Darren and John-george were actively involved as research participants in the MIRRA project at UCL.
In these two podcasts, they talk about the emotional impact of receiving care files, the importance of child-centred recording, and provide suggestions of how practitioners can implement good recording.
The podcasts enable social workers and data governance officers to reflect on:
- What it means emotionally to access your care file.
- The experience of reading your care file, and its emotional impact.
- The significance of redaction and not hearing your voice within your care records.
- What child-centred record keeping would look like and why it is so important.
- The power and use of language within records, and recording positive ‘joyous moments’, and times of celebration not just negatives.
The second podcast sets out recommendations to take forward in your organisation or team, the importance of involving the child and young person in the process of creating records which will be central to their knowledge of their lives when they are adults.
Follow the link below to listen to the podcast.
Guidance from the Information Commissioner’s Office about responding to an individual’s asking to see what personal data an organisation holds about them
The ICO in October 2020 issued guidance about how organisation should respond to a Subject Access Request. The link is here:
ACRCG responded to the consultation in detail (see our previous post with a link to our response to the consultation), and we are pleased that points we made have been taken up. Although the guidance is not specifically designed to meet the rights of adult care leavers, it has some useful messages for organisations to take on board.
Key messages in the guidance:
- it is a fundamental right of all individuals to know what personal information [data] the organisation holds about them
- a request for this information does not have to be in writing: organisations cannot insist on this but it may be useful to record that a request has been made
- the organisation cannot charge a fee and must provide the personal data within 20 working days
- names of person recording personal data about an individual in a professional capacity should be shared with the individual making the request.
We had made this point very strongly because it is most important and here’s the example given in the guidance:
“….it is reasonable for the council to provide the social worker’s personal data to the requester in response to the subject access request. However, the council must either have the consent of the family member, or consider whether it is reasonable to disclose their personal data without consent. If the council does not have consent, it is likely that it needs to reconcile the individual’s right of access in respect of any duty of confidence owed to the family member.”
It remains to be seen, of course, how the guidance will be interpreted by individual local authority departments and will, no doubt dictate further attention by our Association.