Newsletter: June 2020

My Autism, Our Lives, Our Norfolk. Local autism strategy launched.

The Norfolk All-age Autism Partnership Board (NAPB) is a collaboration between autistic people, their parents/carers, voluntary and statutory organisations working together to co-produce and implement a local autism strategy.

The Norfolk Autism Partnership Board has formally launched a local autism strategy called ‘My Autism, Our Lives, Our Norfolk’, a five-year strategy that sets out the ambition to transform the support autistic people, their families and carers can access locally.

‘My Autism, Our Lives, Our Norfolk’ lays out the local responsibilities of delivering the ‘Think Autism’ Statutory Guidance, as well as the priorities established in the NHS Long Term Plan. The strategy has been created with the input of autistic people at every stage, alongside family carers, voluntary sector support organisations, community groups, and wider statutory sector partners.

Bill Borrett, Cabinet Member for Adult Social Care and Chair of Norfolk’s Health and Wellbeing Board, said: “I really welcome this – it is an important piece of work I am very pleased to have been involved in. I think this should give us a real vision to extend equal opportunities to people with autism across the county.”

Trevor Key, Co-Chair of the Norfolk Autism Partnership Board said “Having the voice of autistic people at the heart of ‘My Autism, Our Lives, Our Norfolk’ is vital”.

James Bullion, Co-Chair of the Norfolk Autism Partnership Board, added “We established the Norfolk Autism Partnership Board in 2018 for exactly this purpose – to work to a local agenda set by autistic people, their families and carers that responds to their local needs and challenges.”

“I’m delighted to see the launch of ‘My Autism, Our Lives, Our Norfolk’ as the culmination of a lot of hard work and input from autistic people across the county, as well as partners from all walks of life” continues.

The strategy details nine priorities to be delivered over the next five years. It responds to what people have told us locally alongside guidance established nationally. It also provides a clear focus on the need for wider awareness of autism across communities in Norfolk.

‘My Autism, Our Lives, Our Norfolk’ has been guided by the Norfolk Autism Partnership Board, which has the responsibility of overseeing the implementation of the strategy over the next five years, including reviewing plans each year to ensure they continue to reflect local and national priorities.

Coronavirus Update

The coronavirus, also known as COVID-19, has meant that the day-to-day lives of many autistic people have changed over the past weeks and months as the whole country has moved into lockdown to prevent the spread of the virus.

It is important that we talk about this period of uncertainty, and what we can and can’t do during the coronavirus. This affects everyone, and some people are particularly vulnerable to becoming ill with coronavirus symptoms.

Mencap have collected a range of helpful resources that look at understanding and dealing with the changes we are all living through, our mental health and wellbeing, explaining the Government’s guidance, ways to keep busy and awareness of scams. You can access these resources on the Mencap website.

In Norfolk and Waveney, we want to hear from autistic people about how your life, and the care and support you receive, has changed during the coronavirus. You can do this by completing a survey online.

Sam’s Story

Sam’s Story: Support for autistic people during coronavirus

Sam lives in Norfolk and is an autistic adult. During coronavirus, Sam has continued to receive care and support, while at the same time following the Government’s rules.

Sam has had a number of things that have changed to help him during coronavirus, such as:

  • Changes to activity schedule to accommodate a long walk each day.
  • Changes to shift patterns to ensure staff are available to support Sam to walk each day.
  • Increased efforts to limit the membership of his staff team to reduce the risk of cross-infection from other environments.
  • Availability of an easy-read story to help Sam understand why things have changed due to the pandemic.
  • Information for staff regarding hygiene standards and use of PPE in the home.
  • The production of personalised masks for Sam
  • Creation of a support plan for Sam for the use of PPE.
  • Use of social media and video calls to help him maintain contact with family.
  • Introduction of activities to do at home in place of activities in the community.

Sam is supported by carers from an organisation called Crystal Care. Josie Meek, Sam’s Support Worker at Crystal Care, says: “During the initial stages of the pandemic Sam was supported to purchase pocket size hand sanitiser to use whilst out in the community, and was supported to increase hand washing. Hand washing has always been promoted for Sam to support his hygiene but this was promoted far more.

“Initially it was agreed that Sam would be more shielded than necessary,” Josie continues. “This decision was not made due to underlying health concerns but because Sam has a genuine fear of clinical environments and is averse to receiving any invasive treatment. Sam would experience a variety of very difficult emotions if he was to contract coronavirus and require treatment outside of his home setting.”

Sam’s home has access to a variety of tools provided by Norfolk County Council to support autistic people to understand the changes that were happening, and staff at Crystal Care have had access to training online for coronavirus, infection control and handwashing. Staff actively use PPE during personal care so Sam is already familiar with gloves and aprons. Masks are more challenging as he is not used to this, and by their nature he may liken them to dentists/ doctors which creates fear for Sam. The home has gradually introduced the use of these to help desensitise Sam and minimise anxiety that may be connected to these. Sam’s carers have made characterised facemasks which staff have supported Sam to try on and wear for short periods in the home. This is done by Sam’s keyworker also wearing a personalised mask as role modelling and to help Sam see this as a normal garment that may be worn under certain circumstances (such as a warm hat/ gloves).

Sam has 3 schedules at hand to respond to 3 different situations. Sam has his normal schedule incorporating a variety of activities that he has been used to accessing, a further schedule with reduced community activity involving one walk per day and increased internal activities, and a 3rd schedule in the event of him needing to self-isolate which involves internal activities only.

Sam’s hospital passport has been reviewed to ensure this is very detailed. In addition to this a checklist is being developed on items that need to go with him to hospital. We see this as really important in terms of personal items that may help Sam feel safe and secure, and to ensure Sam has access to devices that provide him with some entertainment such as some favourite music/ films.

We hope you enjoyed reading Sam’s story. To share your story and experience of support for autistic people during coronavirus, please email contact us.

Autism awareness training

The Norfolk Autism Partnership Board aims to offer autism training to everyone in Norfolk. All plans need to have a beginning and for this reason a Board member Norfolk County Council offered the co-produced training to its staff.

In November 2019, the Core Competencies Framework for Supporting Autistic People was released. The associating document ‘Right To Be Heard’ (2019) states that in April 2021, the Health and Social Care Act (2014) will likely be amended to make training in Learning Disabilities and Autism mandatory for all staff working in health and social care. It is intended when the co-produced training has been aligned to the framework and accredited, the autism training will be rolled out to wider partners.

The NAPB Workforce Development Group co-produced:

  • Basic autism eLearning training intended to be offered to all who wish to access it.
  • Specialist face to face autism training, for those staff who make decisions on behalf of autistic people.

Since April 2019, 1500 (84.7%) Norfolk County Council staff have completed the basic autism e-learning programme. 385 members of staff have completed the face-to-face autism training.

Norfolk Autism Partnership – membership

The Norfolk All-age Autism Partnership Board (NAPB) needs your help to inform and guide the work of the Board and Working Groups.

You can help to inform and guide the work of the Board and its working groups by becoming a member of the partnership.

By becoming a member of the partnership you can be sent the newsletter, offered opportunities to help shape support and service, and attend a forum to raise local concerns or celebrate what is working well for autistic people in your community.

The working groups oversee the implementation of plans set out by the Norfolk Autism Partnership Board. These groups are inclusive and involve experts by experience, parents and carers. Every member of the group has a defined role, with responsibility and ownership to explore solutions to issues raised.

If you’d like to be a part of the Norfolk Autism Partnership Board or apply to join a working group, or get involved.


Leave a Comment

Your email address will not be published.