Today the Joint Committee on Human Rights (JCHR) Published a report on the impact of the Covid-19 (Coronavirus) pandemic on the rights of young people with learning disabilities and/or Autism. We have created a plain language Explainer on the report which you can read here.

The JCHR’s findings have mirrored our experience here at BIHR. Since lockdown hit, my colleagues and I have been working directly with people, community groups and staff in frontline services across the UK, delivering human rights sessions and support. We are focused on helping people to mitigate the impact of Covid-19, and in particular the government’s responses at local level, in people’s everyday lives. This is through direct support so people can assert their human rights, and if they are staff enabling them to uphold people’s human rights during this crisis.

The largest groups of people we are supporting are people with learning disabilities, Autistic people, and/or people with mental health issues. We are working with people directly, their families and carers, as well as advocacy groups, and social work, housing, and education staff. Having worked with nearly 1000 people, every week we are hearing real fears about blanket bans on visiting family members, increased use of restraint (which could amount to inhuman and degrading treatment) and suspension of inspection. These are the very things raised by the JCHR report. These are not simply unfortunate consequences of the pandemic; they are human rights abuses.

The Covid-19 Pandemic and Human Rights

The Covid-19 pandemic and the response of the Government to it has affected all of us. However, in our work, and as the JCHR Report makes clear, we have seen that groups of people that were already in vulnerable situations being placed at even more risk.

The pandemic is of course a global issue. Internationally, it has been recognised that responding to Coronavirus raises concerns about the extent to which people's human rights will be upheld, and that human rights have to be central to the response to Covid-19 and the ongoing recovery (which could be the situation for years to come):

 

 

Here in the UK we have the Human Rights Act, which actually puts a legal duty on the government, public services and all those that work for them to respect, protect and fulfil people's human rights across all decisions and actions. It also means other law and policy should be applied in a way that respects and protects people's human rights. If these duties aren’t be met then legal action can be taken. These duties to uphold human rights remain in place during Covid-19. The pandemic is not an excuse to breach people’s human rights, and if this happens, it remains unlawful. Interestingly, parts of the Coronavirus Act specifically state that emergency changes to laws must not breach human rights. This is the case anyway under the HRA, but having it on the face of the law is a welcome approach. You can read our plain language Explainer on the Human Rights Act here.

Do people know their human rights and the legal duties of officials?

So our HRA provides people with legal backing to challenging a range of poor practices that happen anyway, and/or are exacerbated by the pandemic. From our experience, real change happens when we are “doing” human rights work together. This means working with both people with care/support needs and the staff delivering the services people rely on. The voices and input of all must be heard, both must have confidence that their issues will be heard and they will be acted upon. But, the reality of our data is that these things are not happening before our interventions. On averge, people and staff rate their knowledge and confidence to assert and uphold human rights before our session at less than 2.5 out of 5.

Whilst most people with care/support needs, and staff, believe human rights are relevant to their lives and works, very few rate themselves as having the knowledge or confidence to do this, and fewer still have ever actually used human rights to help change or make decisions.

This is why human rights support is so important. These sessions have been some of my favourite that I have done so far during my time at BIHR. Although people are often in increasingly vulnerable situations due to this pandemic (and the Government response to it) during the sessions, people have been so engaged and excited by the idea of using human rights to create change in their lives and the lives of those they support. The language of human rights has given people, who are too often disempowered by the system, the confidence to speak up for themselves when interacting with public services. People have shared with us how they will take this support away to help secure rights during Covid-19.

After our most recent session with people with care and support needs, families and carers, over 65% of people were more able to challenge decisions about their family member or friend’s care, to challenge blanket approaches to care and treatment at any time, not just during Covid-19. The same number felt more able to raise awareness of laws, policy and guidance that affect their or their family members’ human rights. As one person told us:

 

"Really worth taking part. So often feels decisions are made about me without me and I had no idea what my rights were. I feel empowered now to start to know how to go about making sure mine and other disabled people in similar situations can look at our rights being upheld."

 

We see similar shifts in the knowledge and confidence of staff to challenge poor decision-making as a human rights issue, and lever their legal duties under the HRA to do things differently. For example, at our recent Local Authority session 100% staff felt more able to challenge blanket approaches to people’s care and treatment, and to apply law and policy in a rights-respecting way.

 

Taking action

 

We often see in our work that using human rights and reminding (or more accurately raising for the first time) public officials of their legal to respect, protect and fulfil people’s human rights, can create real change. But we also know human rights are not a magic wand. People can be in very complicated situations and the issues they face are often systemic, and require more than individual advocacy or changed decisions. That is why the work of the JCHR in shining a spotlight on these issues is so important.

 

The fulfil aspect of the human rights duty, also means understanding what is happening, what is going wrong for people, addressing this and preventing it. It is vital that we ensure this evidence is documented, that people’s experiences are captured, and action is taken now, and not simply a reflection process for after the pandemic. Action now to protect human rights, can prevent further human rights abuses during the pandemic.

 

The JCHR has made a number of recommendations that we support.

 

  • NHS England must write immediately to all hospitals, including private ones in which it commissions placements, stating that they must allow families to visit their loved ones, unless a risk assessment has been carried out about the individual’s circumstances which shows clear reasons specific to that person about why it would not be safe to do so.
  • Figures on the use of restrictive practices, including physical and medical restraint and any form of segregation, detailing any times where this goes beyond 22 hours per day and amounts to solitary confinement, must be published weekly by the institutions. These figures must be provided to the Secretary of State for Health and Social Care and reported to Parliament.
  • The Care Quality Commission (CQC) should carry out all their inspections unannounced; this is particularly important where any allegation of abuse is reported by a young person, parent, or whistle-blower.
  • The CQC must prioritise in-person inspections at institutions with a history of abuse/malpractice, and those which have been rated inadequate/requires improvement.
  • The CQC should set up a telephone hotline to enable all patients, families, and staff to report concerns or complaints during this period.
  • Now, more than ever, rapidly progressing the discharge of young people to safe homes in the community must be a top priority for the Government. The recommendations from the Committee’s 2019 report must be implemented in full.
  • Comprehensive and accessible data about the number of those who are Autistic and/or learning disabled who have contracted and died of Covid-19 must be made available and include a focus on those in detention, for whom the state has heightened responsibility for their right to life.

 

We would also add there is a key need to ensure that staff across public authorities who should be supporting young people with learning disabilities and/or Autistic young people, place young people’s human rights at the heart of their decision-making. This should be explicit, documenting how human rights have been considered, and if they are being restricted how and why, demonstrating that relevant legal tests around least restrictive options have been met. This needs to go alongside enabling the young people themselves to be able to know and raise their human rights with staff, along with parents, and other relevant carers and supporters. This must be done with the context of Covid-19, but also to lay the foundations for the future, and move away from the everyday vulnerability young people face, and towards being supported to live an equal, dignified life.

This in turn, demonstrates why our Human Rights Act, remains so important.