Julie Newcombe is the mother of an autistic young man and the co-founder of Rightful Lives.
History, it seems, does not please everyone. Once again, protests are dominating the media. The harrowing images of George Floyd’s killing by a US law enforcement officer have coalesced into Black Lives Matter.
The speed with which the symbols of the past have been targeted, the destruction and defacement of historic monuments and statues, may turn out to be no less significant than the toppling of Saddam Hussein’s effigies.
But there are more heinous things than rewriting history – however terrible the past was. Allowing or, worse, enabling history to repeat itself is such a thing. Sitting back and doing nothing, turning a blind eye, when this allows the continuing abuse of the most fundamental human rights, is reprehensible. History will, inevitably, pass harsh judgement.
There is a distinction to be made here. It is not always easy or practicable to take direct action against atrocities committed elsewhere, such as in a distant war. But how shocking would you find it to learn that certain fundamental human rights are not merely being ignored, but actively trampled upon in our own society?
They are happening. And, to make things worse, they are happening to some of the most vulnerable people in Britain.
You may have seen or heard examples of these abuses for there are many examples. Reports have surfaced from time to time in the media. In 2011, BBC Panorama broke news of serial abuse being carried out in Winterbourne View Hospital, in Hambrook, South Gloucestershire. As a result, six care workers were jailed, and the Government pledged to move all people with learning disabilities and/or autism inappropriately placed in such institutions into community care by June 2014.
But the Transforming Care and Commissioning Steering Group, chaired by Stephen Bubb, reported later that same year that “Not only has there been a failure to achieve that movement, there are still more people being admitted to such institutions than are being discharged.”
Eight years later, news of similar abuses emerged from Whorlton Hall, an independent hospital in Barnard Castle, County Durham. Both hospitals, it transpired, were owned and operated by the same group, Cygnet, despite various ownership changes in the interim. Other news outlets have produced a raft of similar stories showing the extent of the abuse in our society.
The cost of commissioning beds in independent hospitals is a huge drain on NHS funds. Furthermore, there is little incentive on private hospitals to discharge patients. Better, more appropriate solutions are needed, no least of which are greater accountability and more rigorous inspection.
Transforming Care has made slow progress. As we have seen during the current pandemic, official statistics do not always provide pinpoint accuracy. Nevertheless, best estimates are that more than two thousand autistic people and people with learning difficulties are still detained in secure units and hospitals, despite governmental commitment to reduce that number, and despite a few of the more progressive Primary Health Trusts being able to demonstrate that good solutions are possible.
This is a long-standing, historic issue, which numerous governments have failed to address. Arguably, it harks back to the way that society, in less enlightened times, used to treat individuals who presented differently.
In 2019 the influential Joint Committee on Human Rights (JCHR) published its report on the ‘Detention of children and young people with learning disabilities and/or autism’ which contained cogent evidence of such abuse breaching fundamental human rights.
It listed a number of comprehensive recommendations designed to end harmful detention, change the legal framework for detention, strengthen the rights of families, improve conditions in inpatient settings and improve the quality of regulatory inspections. The committee also recommended that “a Number 10 unit, with cabinet level leadership, must be established to ensure reform is driven forward”.
Until quite recently, one might almost have been inclined to believe that matters, finally, were starting to head in the right direction. How quickly things can change.
Since Covid-19 began its relentless march, this group has become the forgotten victims of the pandemic:
- Those detained, often struggling to communicate, have been shut off from family and friends;
- Potential Care Act easements and the possibility of detrimental changes to protections under the Mental Health Act;
- CQC inspections, which might have provided some protection, have been suspended;
- Despite government guidelines to the contrary, some even remain at risk of having a ’Do not Resuscitate’ order placed upon them in the event of them catching the coronavirus.
In short, conditions have worsened. So the JCHR issued a second report this month, in which it describes the situation as a “severe crisis”. It has also issued further recommendations, saying that “rapidly progressing the discharge of young people to safe homes in the community must be a top priority for the Government”.
Is the way in which these vulnerable children and young adults are being treated any better than the way in which they would have been sequestered, incarcerated and forgotten in Georgian and Victorian times? They are being denied the support a rigorous inspection regime should bring.
These are wider issues that will only be solved by (1) full accountability for those procuring services; and
(2) upfront ring-fenced funding to provide the right care in the community. In the long run, this will be cheaper for the tax payer and less of a drain on public funds.
The preservation of every individual’s human rights is an essential condition and goal of civilised society. Its absence or abuse is not avoided simply by rewriting the past. That may purge painful reminders, but may also limit the opportunity to learn important lessons.
At the same time, human rights cannot be preserved solely by legislation. Their significance is such that it places an obligation on individuals to speak out and challenge breaches, a civic duty essentially. Ultimately, these outrages expose wider attitudes in our society towards people with autism and learning disabilities when they can be so mistreated by the state.
That breaches might be allowed to continue in civilised society is insupportable by any standard. That historical abuses should be repeated is a democratic call to arms. That only a few thousand people are impacted rather than millions is irrelevant.
Such treatment is reprehensible, a stain on our society. Matt Hancock has promised action. He needs to deliver finally on his words, and prove the government cares about these people and their families. We must not allow history to keep on repeating itself.