Announcement regarding the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers Strategic Oversight Group

Following on from the announcement of the delivery partners in July of this year of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers, there has been a process by which Autistic representatives were able to apply from the NHS England Learning Disability and Autism Advisory Group to join the Strategic Oversight Group led by Skills for Care, Health Education England, and the National Development Team for Inclusion. 

After an application and interview process, Autistic UK is proud to announce that one of our Directors, Julian Morgan, as a member of the NHS England Learning Disability and Autism Advisory Group and the NHS Citizen’s Advisory Group, was appointed as one of two independent Autistic members of the Strategic Oversight Group.

Visit the website here

Julian will be attending his first meeting of the Strategic Oversight Group at the end of October, and is looking forward to being able to put our wider Autistic community’s views and concerns forward to those responsible for its implementation and evaluation. 

To this end, Autistic UK will be continuing its focus groups and surveys so that Julian is fully informed and up to date with the wider Autistic community’s wishes and concerns. Through this we hope to ensure that your voices are heard directly by those who need to hear them. Our next survey will be shared across our platforms in the next few days, with the questions being based on the answers received in our initial survey. The report generated from our initial survey has been passed on to the Implementation and Evaluation Partners via NHS England.

As one of Autistic UK’s founding principles is that we do not seek to speak for Autistic people but provide a platform for their voices to be heard, we encourage all of you who read this to grasp this opportunity to have your views put before those decision makers responsible for the creation, implementation and evaluation of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers. In turn, we will also use the discussion points from the Strategic Oversight Group meetings to inform our future survey questions. In particular we are seeking answers from those whose voices are normally not heard, especially those of you who also have a learning disability and those with high support needs.

We will also be putting out surveys which focus on intersectionality, for example, LGBTQIA+ and Black and other Ethnic Minority communities. This is to ensure that health and social care inequalities faced by those further marginalised groups are specifically highlighted, and that feedback isn’t based on one subsection of the Autistic community.

This will also include input from the official partners regarding the areas which they would like to consult with you on, which should give our community an idea of their understanding and focus. These will always be put out separately and be clearly identified as questions being asked by those organisations. Please be assured that all of your answers to these questions will be passed on anonymously, but word for word.

As ever, the results of all of these surveys will be published on our platforms as soon as they are available.

Getting away with murder; and why it should not happen

Photo credit: USA-Reiseblogger available free on Pixabay

Like all of our community, we are deeply saddened by the death of an Autistic child whose mother has been subsequently charged for his murder.

The greater tragedy surrounding the murder of this little boy is that it is unfortunately far from being an isolated case. This is rarely reported in mainstream news, and all too often when it is, the blame is laid at the feet of the murder victim as a burden to society.

This victim blaming culture is most visible on social media, where people flock to express their sympathy and empathy for the perpetrator, raising them to the status of a martyr. Phrases such as “mercy killing”, “they are in a better place”, and “what else could they do?” flood our newsfeeds, while the Disabled community’s voice is dismissed as “not understanding how hard it is to be the parent of a severely Disabled Child”.

Disabled people are parents too. Generations of families live with severe genetic conditions, many of which are hereditary and vary in their severity of their presentation. We are quite aware of “how hard it is to be the parent of a severely Disabled Child”.

At Autistic UK, we believe we echo our community’s voice in condemning these insidious attitudes often voiced by those who are not parents of Disabled Children.

Our current societal culture has developed the ability to see Disability as a reasonable excuse for murder. The pervasive view that the caregiver has no other choice needs to stop. There are always choices; even the perceived failure of giving up your child is preferable to murder. Murder is never acceptable.

We would suggest that other options include:

Seeking professional help:

  • taking the child to hospital
  • taking the child to a police station
  • taking the child to a fire station
  • taking the child to social services
  • dialling 999 if you feel you are about to harm your child
  • calling your GP and telling them you can’t cope
  • contacting disability charities and their associated support networks

These services and routes all lead to a Safeguarding Duty. Everybody in the public sector has responsibility under this duty. Duty holders must act in the best interests of the child.

Informal help:

  • seeking help on social media and/or websites – there are lots of support groups out there whose members will have similar difficulties
  • family and friends
  • contacting disability charities and their associated support networks
  • finding a local support group
  • open your web browser on any device and search “help with <insert name of disability>” – there will be a number of results providing details of support networks

Where specific support organisations don’t exist, there is always Unique, a Charity dedicated to supporting families of children with extremely rare genetic conditions.

For further information about this, please visit https://blog.theautismsite.greatergood.com/caregiver-murder/.

 

If you are distressed or affected by  the issues discussed in this statement, you may wish to contact one of the following support helplines:

Samaritans: Telephone 116 123

Shout: Text “Shout” to 85258

Papyrus: Hopeline UK Telephone 0800 068 41 41

National Domestic Abuse Helpline: Telephone 0808 2000 247

Childline: Telephone 0800 1111 (they also take calls from adults concerned about a child)

Cruise Bereavement: Telephone 0808 808 1677

Most of these organisations also have a chat function on their websites. In order to maintain your confidentiality, many of their telephone numbers will not show up on statements and may not be traced back to them in your call logs. You can find details of this on their websites.

Statement regarding the ‘Oliver McGowan Mandatory Learning Disability and Autism training’

This article was written collaboratively by Julian Morgan and Kat Williams

To start, Autistic UK would like to add a grateful acknowledgement of ALL those of us who have been pushing, campaigning and demanding formal learning disability and autism training to be nationally available. The announcement made today that all health and social care staff in England will receive mandatory autism training is the outcome we were all rooting and campaigning for, and is – on the surface – a huge step in the right direction.

But as ever, the execution from the NHS and Government never fails to disappoint.

Though medics may not be required to take the Hippocratic Oath, the statement “first do no harm” should still apply. The Oath was replaced by the General Medical Council’s (GMC) “duties as a doctor,” which many universities use as part of their medical graduation ceremonies as a ‘pledge’ to uphold, and all doctors must adhere to.

Now the Autistic community in England (not the UK as headlines suggest) finds out the ONLY autism related organisation that will be implementing ‘Oliver McGowan Mandatory Learning Disability and Autism training for all health and social care staff’, as announced, is one which has a history of exploiting those Autistics who contributed to its past online training packages. It’s also rather short of paid Autistic employees too; unpaid ‘volunteers’ and ambassadors it has in multitude. Other contributors include learning disability charities – all of which are parent focused or led – and this news has sparked a high level of concern within the Autistic community.

The “duties as a doctor” states that medics should “Never abuse your patients’ trust in you or the public’s trust in the profession.” Handing a training contract over to a parent-focused charity with such an atrocious history of death and neglect in their own care homes has deftly broken that trust in one fell swoop.

Medics must “Listen to, and respond to, their concerns and preferences,” yet they refuse to listen to the Autistic community who, for years, have been telling them that training should be directed and delivered by Actually Autistic people who have lived experience. The NHS employs lived experience advisers in many areas, yet autism seems to be a category in which “mother knows best.”

One of our Directors – who also sits on the NHSE Advisory group on Learning Disability and Autism – was promised that the NHS-wide training on autism and Autistic people would be co-produced and developed by lived experience advocates. Were they actually listening, or just saying things they thought we would like to mollify us?

They promised that what we referred to as ‘The Usual Suspects’ would not be their go-to choice for autism as they were heavily biased in their experience towards learning disabilities, and had no real experience of Autistic people other than ‘as learning disabled’ and were wedded to the medical model of care.

‘NO!’ they said, ‘Local implementation! Lived experience all through. Not all learning disability charities doing it…’

Despite promises to stop the standard practice of treating Autistic people as learning disabled, we now have a selection of learning disability service organisations telling medics and care staff what Autistic people need, without any meaningful Autistic consultation or input. We asked for separate, independent, Autistic advocates and organisations to be included in designing the bid and training, yet the infantilising of Autistic people (especially those with learning disabilities) means that it is presumed we are unable to know what we need and desire, let alone deliver this training ourselves. Of course, our betters know better than we do about what Autistics want.

The NHS has broken its pledge that ‘lived experience advisors will be used in all decision making and implementation processes in all areas.

What happened to Nothing About Us Without Us?

The chances of Autistic people who do not “toe the line” with the service provider in question contributing to this massively important work, has basically slipped to zero. Thanks NHS and Government. Notice how Autistics do not even make the headline on this official announcement from a national provider to the Care Industry?

The GMC’s duties of a doctor also states that they must “Work with colleagues in the ways that best serve patients’ interests.” We’re going to go a little off the path with this one, but realistically colleagues does not solely include other doctors. This includes the trainers, the administrators, the managers etc. Working with trainers who have demonstrated that they do not serve Autistic patients’ interests, yet again, goes against this ethical guidance.

Medics must also “Protect and promote the health of patients and the public.” They cannot protect the health of Autistic patients while simultaneously working with an organisation which has actively harmed Autistics, particularly as they then attempted to cover up said harm. Do they think we have forgotten Mendip House? Forgotten the cover up? This is especially pertinent as the NHS and Government’s working relationship involves them teaching medics and care staff how to better care for a portion of society they harm.

How do you feel about an organisation that still sends schoolchildren to secure units and ATUs telling care staff how to look after autistic children and adults?

An organisation that uses and promotes ABA and PBS for all? (If you don’t know why that’s a bad thing, please read this article written by Kat Williams on her site)

Have you forgotten the whistle-blower(s) and the denials of responsibility?

Do they think we have forgotten the abuse?

Does their track-record demonstrate that they’re up of this job? That further deaths will be prevented?

This is the organisation that will now train others to care for YOUR loved ones. A fine example of vanity and hubris above and beyond the call.

This organisation veils itself using the Social Model of Disability in its public image, yet follows the Medical Model of Disability behind closed doors. The thought of an organisation that treats the Autistic community as an income stream is not representative of that community. Its unwillingness to advance the Autistic cause through meaningful coproduction (rather than public-facing tokenism) is chilling. This is an organisation that practices ABA (as are the others which are involved). This organisation incarcerates children and abuses its charges. The NHS has already had ABA/PBS snuck through the back door through the Transforming Care Programme, and this new contract will see systems that Autistics have been campaigning to reform move back into behaviour-led thinking led by organisations whose training will be coloured by their own negative opinions.

The GMC code also states that medics must “Take prompt action if [they] think that patient safety, dignity or comfort is being compromised.”

Therefore, to the NHS and Government, we invite you to take prompt action now. Your Autistic patients’ safety, dignity and comfort are all being compromised with this union.

“You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions…” Can you justify this?

Feel free to express your opinion to the National Autistic Society, Mark Radford at Health Education England, NHS England, and Minister for Care Helen Whately.

Breaking News – Pupils in wales to return to full time education in September

Kirsty Williams – Education Minister – has just announced that all schools will open on 1st September for all pupils, with schools having the option to initially prioritise entry for key year groups (Reception, years 7, 11, 12 as examples) for the first few days.

This announcement is subject to the continuing steady decline of positive COVID-19 cases. Kirsty stated:

  • There will be limited social distancing
  • Children will typically in contact groups of 30
  • Social distancing guidance for adults should follow the general guidance at the time
  • If there’s a local COVID-19 outbreak schools will conduct risk assessments with the LEAs
  • If staff/pupils test positive the TTP system steps in
  • Schools to have a stock of home testing kits for this eventuality
  • Schools will have back up plans in case pupils need to return to remote learning
  • Guidance for schools will be published Monday next week
  • Logistical challenges will be addressed in the guidance
  • Unions have been consulted and have an opportunity to feed into the guidance before it’s published on Monday
  • Welsh Government are working with childcare groups to enable them to increase their contact group numbers
  • Welsh Government will provide £29million funding to recruit the equivalent of 600 new teachers and 300 TAs
  • This funding will be fairly distributed across Wales into school budgets
  • An additional £5million will be provided to double resources relating to pupil mental health and wellbeing
  • Welsh Government currently have a Whole School Framework Consultation regarding wellbeing
  • Targeted support will be provided for disadvantaged and vulnerable young people, and pupils in years 11, 12, and 13
  • This targeted support is to assist with reducing attainment gaps
  • Minister states that parents should be confident in sending their children back as WG are following scientific advice
  • TAG understanding of COVID-19 is that younger children don’t seem to be vectors for the disease
  • International studies show that under 18s make up less than 2% of COVID-19 cases
  • Minister advises it would be disingenuous to claim there is zero risk – it’s about mitigating risk
  • Parents will initially not be fined if they choose not to send their children back – this could change in the future
  • If a household has a high risk family member a family centred approach will be taken
  • Guidance regarding vulnerability has been published by WG

Autistic UK will read the guidance once published to ensure the needs of pupils with Additional Learning Needs and Disabilities have been considered. Information regarding our ongoing work in this area can be found here.

Whorlton Hall Panorama Report – A Statement

From the Directors of Autistic UK

Written by Errol Kerr and Kat Humble

Within the past few months, the revelations as to how the most
vulnerable of our community are treated at the hands of healthcare
professionals have been horrifying, though unsurprising, to us at Autistic UK.

Whether it’s Winterbourne View, Whorlton Hall or who knows how many
others, there is the level of contempt amongst those who provide care for
autistic and learning disabled people. Our long-term physical and mental health
needs go unmet, thus shortening our lifespans and damaging the lives that we
and our families live. There is a very good reason why the suicide rate amongst
autistic people is nine times higher than the national average. This number,
combined with those who die from neglect or incompetence is a canker in the
heart of our society that is being ignored.

Denial of Rights

Some deny us our right to adequate support for being “too expensive” to meet our needs locally. Some attempt to deny us support because it’s too much effort and keep passing it on to another agency. Then there are those, like the gang of staff members at Whorlton Hall, denying us support in favour of constant abuse and victimisation because they do not see us as fully human. We are “other” to them and therefore fair game.

This is not new. It is not a surprise, at least not to us. It is an
obvious outcome of a society that does not value difference. A society that not
only doesn’t value difference but fears it. A society where people feel they
must distance themselves from others who don’t conform to their definition of
normal. It is also the obvious outcome of a system that is not only corrupt,
but essentially unmonitored despite the existence of the CQC. An organisation
that is rapidly proving itself unfit for purpose.

The inhuman abuses that our people have regularly suffered at the hands
of those meant to care for them will shock the general public for a little
while and then, when we are no longer front page news and people have forgotten
about us, another revelation will happen. But, as incredible as this
investigative programme was, it alone will not change what is happening.

Panorama

In 2011, Panorama shocked the nation with the revelation of the abuses
at Winterbourne View. The CQC investigated the rest of the homes operated by
that company, Castlebeck Care, and found a “systemic failure to protect people or to
investigate allegations of abuse” and accused Castlebeck of misleading
them. Shortly after, the CQC came under scrutiny itself when it was discovered
that they had received numerous allegations of abuse dating back to 2008. The
head of the CQC resigned following the investigation. Sadly, that appears to
have been the sole outcome.

Now, eight years later, Panorama has
found another vile example to shock the public, Whorlton Hall. And again, they
have done a stellar job of showing the extent of the horrors that have
happened. Yet there have been numerous discoveries of such abuses between these
two investigations. One example was Mendip House, run by the NAS, who were
accused by the resident’s relatives of hiding the abuses suffered by their
loved ones for years before acting.

The Cover Up

Evidence in the report by the Somerset
Safeguarding Adults Board showed that the NAS had conducted internal
investigations which revealed extensive degradation of the people under their
care but did not alert the CQC or the police of these crimes. The report observed that it was “remarkable”
that, five years after Winterbourne, these abuses were not brought to light for
so long. The NAS was fined £4000 by the CQC for the financial abuses committed
by the staff, but not the perpetrators of the physical and mental abuses that
occurred. Despite these findings, the CQC stated that no other action was
required of them. No criminal charges were brought and the residents of that residential
care home were left without justice, like so many others. And so it continues.

Fit For Purpose?

A watchdog with no protective instinct is
useless. In a 2017 report by John Burton of the Centre for Welfare Reform, it
is shown quite clearly why the CQC is so ineffective. Instead of listening to
residents and loved ones directly, these worried people are directed to a call
centre where staff have no knowledge of who that home’s local inspector is or
how to reach them. All this call centre can do is essentially take a message
and put it on the home’s file. Reports of abuse and concerns of neglect are
left to pile up between inspections. Even then, those reports are often not
regarded, as the CQC rely most heavily on documents like care plans rather than
digging beneath the polished surface presented by a care home that knew they
were going to be inspected.

These abuses will not stop until the CQC
is reformed from the ground up. Autistic and Learning Disabled people are
speaking, CQC, are you listening?

Statement: On the NAS’ removal and reinstating of Mermaids’ information

This is a statement regarding the National Autistic Society’s decision to remove information from Mermaids, a trans youth support network, from their website. This also discusses their decision to reinstate it after mass objection online. This occurred over the week commencing 01/10/2018.

Continue reading “Statement: On the NAS’ removal and reinstating of Mermaids’ information”