“Tick Tock” While we talk, people are waiting

In January 2025, the Scottish Human Rights Commission (SHRC) published its Spotlight Report  “Tick Tock…”, A human rights assessment of progress from institutionalisation to independent living in Scotland.

On Tuesday 1 April 2025 the SHRC appeared before the Equalities, Human Rights and Civil Justice Committee to discuss the findings from the report;

This blog is the opening statement to the Committee from Jan Savage, SHRC’s Executive Director, who articulates the context for the Spotlight work, the concerns over a lack of progress or impact from previous action plans, and recommendations that require urgent action and a commitment to real change.

“Good morning Convener, and thank you very much to the Committee for allocating time to consider the findings of the Scottish Human Rights Commission’s spotlight work to examine Scotland’s progress in ending the institutionalisation of people with learning disabilities and/or who are autistic. We have undertaken this work under Section 3 of the SCHR Act and make recommendations under Section 4.

"In pursuit of our general duty to promote human rights, the Commission took the decision to undertake this work in 2023, informed by the inclusion of this issue as a priority in SNAP2 – Scotland’s National Action Plan for Human Rights, and its monitoring of the UN Convention on the Rights of Disabled People (UNCRPD), also in 2023.

"I am pleased to be joined by Cathy Asante, a senior human rights lawyer in the Commission who is the spotlight lead and report author, and Oonagh Brown, our policy and participation officer who has ensured that, in line with the Commission’s Strategic Plan, the voices of people affected by this issue have been at the heart of the project, and that one of our outputs has been a toolkit for those people to empower them to better name and claim their human rights – a first for the Commission, and not the last.

"In many ways, I imagine that our report is not new news to the Committee.  It has long been known that many people who have a learning disability and autism are detained in institutional and medical settings when they should not be.  But a human rights assessment of the issue is new.

"Each of these people has a right, under UNCRPD, to live independently in the community with the support they need.  Despite the progress made in closing large scale institutions in the 1990s and 2000s through the ‘Same As You?’ policy programme, by 2018, the Scottish Government recognised that there were significant numbers of people who are stuck in hospitals despite no longer needing to be there, and had a plan, ‘Coming Home’, between 2022 and 2024 to get people out hospital. 

"Ending the use of institutional care for all disabled people is a matter of urgent priority from the UN Committee on Rights of Persons with Disabilities.  The Committee directs that all forms of institutionalisation must be abolished and replaced with individualised support in the community.  They make clear that there is no justification for continuing with institutional models and States should not use lack of support and services in the community or any other factor to justify the ongoing maintenance of institutions.

"Alongside this clear direction, we have the benefit of clear guidelines that set out, step-by-step, the actions duty bearers must take to make this a reality.  Following these guidelines is what it means to take a Human Rights-Based Approach (HRBA) so this is what we set out to measure.

"There is no absence of will and policy commitment.   But we have found that there is a clear absence of impact of successive policies and plans, and no evidence of a human rights-based approach, despite passing reference to this in the plans themselves.

"What we do find in headline terms is the failure of the State in Scotland to meet Article 19 of the UNCRPD, which is the right to independent living, for this population.

"The starkest finding is that there has been no real change in outcomes – people continue to spend many years living in hospitals and those numbers did not “greatly reduce” as the commitment intended. 

"And we report emerging concerns that we find may evidence violations of rights in the European Convention on Human Rights, as protected for us all in the UK via the Human Rights Act (HRA) 1998; namely Article 3 – the right to be free from inhuman and degrading treatment; Article 5 – the right to liberty; and Article 8 – the right to family life.

"These are rights which are already justiciable in law, and it is possible that the Scottish Government could face legal action from an individual or a family member of an individual on that basis.

"In our view, it is less probable that this would happen – and indeed hasn’t so far – because of the barriers faced in accessing information about rights, advocacy support services, legal aid and emotional bandwidth required to pursue such cases.  Nonetheless, we have provided this information in our Toolkit, which accompanies the report.

"Hearing directly from people affected by this situation has been sobering, and it continues to be.  Our report highlights that we have real concerns about whether people’s rights protected by the HRA 1998 are being protected when they remain in hospital long beyond the point necessary.  We are also concerned with the treatment that takes place while they are there – we have heard of people living in isolation and separated from their families for years.  It is important that the focus is not on justifying these situations but in ending them, and urgently.

"The question raised by our report is - why does this keep lapsing?  Why this population?  And what is stopping urgent action?  Our report is named Tick Tock, in the words of Kate, one of the members of the Project Group.  Throughout this project, when we talk about people living in institutions, sometimes conversations get stuck on how complicated things can be.  They can get stuck in the slow process of changing laws and policies.  Kate has always made sure we focus with this one phrase – “Tick Tock”.  This reminds us that the situation is urgent - while we talk, people are waiting.

"In terms of what next, we have made a series of recommendations:  It is clear that the Scottish Government must produce a new action plan, using our indicators to guide a UNCRPD compliant approach.  But this now becomes a story of:

Political Leadership – in the absence of immediate legislative levers, this requires strong political leadership to make the change.

Accountability – continued and robust scrutiny of progress is essential, so that inertia does not persist and we are reviewing the same lack of progress in another four years.  Parliament has a role to play here as do regulatory bodies, such as the Commission, the Mental Welfare Commission – and we have suggested that an Independent Mechanism be established to monitor and drive progress on a case-by-case basis.

Apology – at the heart of our findings are 55 people who have been detained in hospital for an average of 17 years.  They have done nothing wrong.  They have a human right to live independently, which the State is failing to provide.  They, and their families, have a right to a process of truth and reconciliation, apology and redress.

"We commend the Committees decision to allocate time to consider our findings today, and remind us all that while we talk, people are waiting – Tick Tock.

"We look forward to exploring the detail, and how the Committee may continue to keep a focus on progress.”

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