Change needs to come, now!

It seems an age since I added anything to my blog, there are many reason’s for that and  the main reason is that I never seem to get to sit down for long enough to have the time.

Anyway I am grabbing an hour or so right now, before it goes missing!

It doesn’t seem long ago that we were all aghast and disgusted by the treatment of vulnerable adults who have learning disabilities and autism at Winterbourne View and this week we saw that, despite the government saying things would change, it is clear that there is still a long way to go.

The Panorama program on Wednesday evening showed Whorlton Hall in Durham. People who had been sectioned, put in this secure unit supposedly for their benefit were being repeatedly abused both physically, verbally and emotionally by Care and Nursing staff.

It was a tough watch for anyone, the vile employees who seemed to get a kick out of exerting power over those who could do nothing about it and could probably not reiterate it to their family and those in a position to do anything about it, was so shocking. Some of the staff, in-fact all the staff in the documentary showed no regard for those in their cares dignity, feelings or did anything which may help their circumstances to improve.

These units are meant to be for those in crisis not for people to live in for years and months but they do, I am guessing part of the reason for that is that their psychiatrist and treatment team see little improvement which is hardly surprising.

It would be very interesting to see the application forms of those staff shown in the documentary, what experience they were bringing to the job. It was highlighted that many of the staff were agency, although some agency staff are very good there is a lack of consistency which is vital to those who have autism and LD (learning disabilities) and you never actually know how good agency staff are until they arrive. Often they are dead wood, floating around just making up the numbers. In that sort of environment this is worth nothing.

I would never suggest that working with people who have challenging behaviour and autism is an easy job, it takes an incredibly special sort of person who can go back to work smiling and positive day after day when progress can be scarce and slow, aggression towards them is high and the hours are long and anti social.

These special people need paying for the work they are doing, they need to receive a salary which recognises the difficulty and responsibility of their job, there needs to be recognition of them doing a job that very few can do well and stick with.

If you put someone in a job like this who does not have the tools which they need to make a difference the outcomes should be obvious, Panorama showed this and some. Not only were the people clearly not able to apply tools which had been developed to de-escalate and calm people they were clearly doing whatever they could to cause distress and high intensity escalations. These people were not fit to work in a job which had contact with any other living being let alone the most vulnerable people.

Something which I find equally disturbing is that there must have been staff at the hospital who were trying to do a good job and probably cared very much about the patients but they must have been aware of the abuse and emotional torture which the patients were being put through which makes them complicit in my opinion. 

Last year Hertfordshire held a Conference which was informing providers and those working with people who have autism and associated disabilities about Positive Behaviour Support.

The overall aim of Positive Behaviour Support (PBS) is to improve the quality of a person’s life and that of the people around them. This includes children, young people adults as well as older people.

Positive Behaviour Support provides individualised support for a person, their family and friends to help people lead a meaningful life and learn new skills without unnecessary restrictions.

It helps people to remain in their own homes, communities and close to the people that they love.

Positive Behaviour Support is based on the principles of ABA (applied behaviour analysis). It is as the name suggests a positive intervention, it has fantastic outcomes and it can change the way people live their lives.

Following the program I contacted Zoe and Danny who I worked on the Conference with and asked if we could kickstart the Counties drive with PBS. Our aim is to have a Hertfordshire Positive Behaviour Support Community both for Professionals and for parents and carers.

I got an immediate response and we are meeting next week to make plans.

If we can get the support right for people who have learning disabilities and autism and complex needs there is far less chance of them being sectioned and ending up in a ATU.

Imagine in 2019 people are still being sectioned for having a disability, totally shocking.

There are various petitions going around after Panorama demanding change. If you are someone who signs petitions or someone who thinks they are a waste of time please take a few minutes to go to Change.org and search ‘End the abuse of autistic people & people with a learning disability in inpatient units‘. If you saw the program I am sure you will feel compelled to sign.

Local government need to commission more expert services who have a deep understanding of autism and related learning disabilities. The cost will be greater short term but the gain most importantly will change lives and secondly long term with financially pay off.

The cost of sending people who have done nothing wrong other than have a disability and needs which are not being understood is huge, thousands of pounds a week and that week turns into months which can then turn into years.

A local home which is run by a national charity and should and could be a nice place to live has a constant stream of agency staff who neither seem to be bothered or care about the residents, the outcome of this should be obvious to anyone and everyone.

When asked about this the regional manager said there was a recruitment problem!

Good staff need to be valued, invested in and applauded for the difference they are making, offered career progression and on the job opportunities to further their relevant studies and training.

None of this is rocket science.

Parents will drive themselves to a nervous wreck to keep their children safe, then their adult children safe because there is so much distrust of the quality of care providers.

We need places in local communities for people who have autism and complex needs to live, places which are suitable and well thought out.

We need to ensure that at the same time as working to bring people back from Assessment and Treatment Units there is also work going on to stop people going in the first place.

Failure is not an option for these people because failure can end up looking like Whorlton Hall.

The Government, local authorities, people who work with vulnerable adults all have a massive responsibility. Change needs to come and fast.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Published by

thezachproject and Spectrum of Misconception

Mother and advocate to my son Zach. Zach has autism and complex needs. My blog is about the project we set up when there was no suitable further education setting for Zach when he left school in July 2016. I find that sharing our successes and struggles is cathartic for me and I hope insightful for the reader. My hope is that others who are struggling to find a place for their child or themselves may draw some inspiration from thezachproject. Thanks for reading my blog, please leave me comments.

2 thoughts on “Change needs to come, now!”

  1. Hello,
    I enjoyed reading your post and I am about o start a PBS network in Thurrock where I work with ABA and PBS. We should keep in touch to support each other. I know some people that have started the PBS network in other boroughs and we can both use their experience. My email is psestini@choiceandcontrol.co.uk.
    Regards,
    Perola

    Like

    1. Hi Perola
      Thank you for your comment. I think we actually met last year when I came with a group from Herts Adult Services. Neil showed us around some of what is going on in Thurrock and we visited you. I know Ashley, Elliott’s Mum. Beam ABA support my son.
      That sounds fantastic thank you. I am meeting tomorrow with Zoe and I will mention this, I am so keen that we get something up and running.

      My email is emma.saysell@spectrumofmisconception.com

      Thank you 🙂

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s