Getting People to Listen

I have had lots of problems with my NHS mental health trust whose social workers are on secondment from my local LA (local authority/council) and have made a good link with my purchasing manager (he is the person in charge of what gets bought).  There are two main types of purchases bulk - one which is used for some providers who have many service users who access them for varying amount of time and spot purchases that are one off or single service users’ purchases.

A social worker contacted me to arrange my review of my support. I asked her after it was clear she knew nothing about autism if she had been trained in the Autism Act 2009. As she hadn’t, I explained it was law,  and the following week I met her face to face and I asked her if she had read up on it, explaining that it is an act and therefore law.

I explained that you can’t represent someone at the panel (a meeting to decide how support funds are allocated) if you don’t understand autism because it means you can’t understand my needs. I then submitted a complaint.

The purchasing manager then e-mailed the head of training and copy and pasted from the statutory guidelines the duty that the NHS LA and foundation trusts have for training. Here it is:-

• Local authorities, NHS bodies and NHS Foundation Trusts should seek ways to make autism awareness training available to all staff working in health and social care. In line with the principles set out in Fulfilling and Rewarding Lives, as a minimum autism awareness training should be included within general equality and diversity training programmes.

• The core aims of this training are that staff are able to identify potential signs of autism and understand how to make reasonable adjustments in their behaviour, communication and services for people who have a diagnosis of autism or who display these characteristics.

• Those staff who are most likely to have contact with adults with autism are the priority groups for training.

• In addition to general autism awareness training for staff, local areas should develop or provide specialist training for those in key roles that have a direct impact on access to services for adults with autism – such as GP or community care assessors – and those whose career pathways focus on working with adults with autism, such as personal assistants, occupational therapists or residential care workers.

The end goal of this specialist training is that, within each area, there are some staff who have clear expertise in autism.

The result of my complaint is that social workers have now signed up for the training available in the borough and after this email from the purchasing manager hopefully more training will be provided.

By Robyn S

Machita: my role as an ambassador

Hello, my name is Machita, mum to twin sons aged eighteen who both have Aspergers and I am proud to be a National Autistic Society (NAS) Ambassador.

Taking on the role has opened up many opportunities for me to help in the campaign to bring autism to life to people that are aware, some interested and some not that autism exists. These opportunities have ranged from writing letters, being interviewed for a website feature, press releases, contributing to an NAS DVD to speaking at the All Party Parliamentary Group for Autism at Westminster and being involved in a lobby day at Westminster regarding the Health and Social Care Bill in relation to autism.

I was delighted to be asked to take part in all of these activities and said yes straight away: then was the time to think about what I had said yes too and panic a little! No need to panic though because I know what I am talking about, after all who could make up the many experiences me and my family have lived through and continue to face into the future and who would want too!

If you have an opportunity to contribute to improving the lives of people with autism and their families, go for it, don’t panic and always remember you know more than the people you are speaking too because you have the real life experience and it is their responsibility to listen to you. It is amazingly rewarding and the staff at the NAS are hugely supportive which makes it a great experience all round.

Machita

End the care crisis lobby

On 6 March, Ambassadors joined thousands of campaigners from across the disability sector for a mass lobby as we demanded the Government take action to fix our underfunded social care system. 

It was a fantastic opportunity to talk about the issues directly with MPs and show how strongly we want change sooner rather than later. 

As well as meeting their MPs, Ambassadors wrote questions for a live Q&A with Paul Burstow, the Minister responsible for this area.   They were also part of the first ever Twobby (online lobby) – which enabled hundred more campaigners who couldn’t attend to still ask questions and tell their story.  As you’ll see from the video our Ambassadors were at the forefront of the photo shoot outside of Parliament which was used for successful media coverage of day. 

Thank you so much to all those who took part in the lobby and if you’ve been writing to your MP in the meantime.  If you want to get invovled then you can do so here.