Challenging Expectations

Challenging Expectations

C’s best interest meeting to determine his ability to consent for a GA didn’t go as I expected.

It was straight forward and very positive!! Everyone easily agreed that C does not posses the capacity to consent so his human rights have been denied (sounds awful doesn’t it) so we have the go ahead. We will next have a pre op meeting to try and sort out how we are actually going to go about administering the GA (with least risk to himself and others) as sedatives and tranquilizers have little or no affect, you can’t prepare C with social stories or pictures, visits etc nor distract him. And his fight AND flight responses are acute!It was also agreed that we could take blood to test for various things, But no decision as yet was made about cutting his nails.
I am not at all looking forward to this as we have been though it once before and know how traumatic C (and I) found it. His self injurious behaviour is these days usually brought on by the actions of others (Suit you, sir? – brilliant article – a must read for staff) and this will be one of those times you can’t avoid.

We agreed to use clinical holding techniques with a cut off point if not working. build have produced a code of practice for physical interventions. Am researching other ways to avoid this if poss – any suggestions welcome!

But at least these days they are prepared to give oral care to people with learning disabilities. It is not that long ago expectations were so low and basic privileges were denied. Children were labelled ‘in educable’. LEA’s have only had to educate all children with special needs since 1970. Long stay hospitals are nearly all closed. Here’s a harrowing reminder of what those days were like – loss of individual and social identity, gender identity, family identity to name but a few – and it wasn’t that long ago

Attitudes are changing. We no longer have to shut our children away, or put up with babysitting (of adults and children) without meaning and value. We want the best education not just ‘training’. Opportunities, real choice and respect. Person first and neutral language. Personalization across all care settings. To be free from bullying on and off blog.

We are no longer afraid to rock the boat and ask for more. We want the same rights as everyone else. Laws are slowly catching up and being updated because of pressure as parents and disabled people have much information at their finger tips and higher expectations. We need to continue to challenge low expectations.

Respecting and involving people who use services

People understand the care and treatment choices available to them. They can express their views and are involved in making decisions about their care. They have their privacy, dignity and independence respected, and has their views and experiences taken into account in the way in which the service is delivered.

As of October 1st the inspections that the CQC do of adult care homes will be based on 2 laws:

Health and Social Care Act 2008 (Regulated Activities) Regulations 2010

Care Quality Commission (Registration) Regulations 2009.

The law that care homes are inspected under at the moment is the Care Standards Act 2000

this legislation will come out of use.

Which means things will be less process driven and more in tune with person centered approaches so outcomes should actually meet people’s needs,

C’s service provider have been great as they are listening to me (and C) and are very receptive. C is one of the youngest therefore my thoughts are different to what they are used to. So my stirring input I feel has been constructive.

C has been stirring too!

The most exciting thing about both these photos is apart from feeling happy and relaxed enough to take his fingers out of his ears – C is doing these things independently and not hand over hand! (I have never seen C press a button before on his own!) Possibilities for Facilitated communication ??? Or i may have to invest in an iPhone with the new Grace app (picture exchange) Great initiative Lisa
But what i would dearly love for C would be to be able to turn his TV or radio on himself (especially in the middle of the night!). And now i feel he is getting there :))

Change can happen

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Jen Shrek on Twitter
Jen Shrek
Mum, advocate and #ActuallyAutistic challenging the system.
Jen Shrek

Jen Shrek

Mum, advocate and #ActuallyAutistic challenging the system.

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