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We started the morning introducing ourselves. We each chose an object from the space of our homes that gives us strength, makes us feel good and says a bit more about who we are.

Discussion swiftly moved on to the very present experiences of navigating the second lockdown, from new guidance to how to get the best from education, social and healthcare reviews taking place online. Towards the end of the meet-up we were joined by Devra, Care Support Worker from Care for the Carers who talked to us about the support they can offer including counselling for parent carers and wellbeing courses.

We have summarised the notes from the meet-up with useful links below.

Join us for our festive Support Collective online meet-up on Tuesday 15th December,

11am-12pm. Email [email protected]

Meeting others safely

If you provide care for a person with a disability you are not counted towards the outdoor gatherings limit. This means the person you care for can meet with one other person which may also include their carer/ support team. For further guidance visit:

Down’s syndrome and the Clinically Extremely Vulnerable group

On 2nd November the government added people with Down’s syndrome to the Clinically Extremely Vulnerable group, advising them to shield.

The government has published guidance here
The Down’s Syndrome Association shared the following in a statement published on 12th November:

‘The addition of all adults who have Down’s syndrome to the list of those who are clinically extremely vulnerable will help people who have underlying health conditions to take extra care. However, professionals also need to ensure that adults who have Down’s syndrome continue to be treated as unique and individual and that the advisory guidance for those on the list is not imposed arbitrarily or without their consent.’

What does the Mental Capacity Act mean?

The current Covid situation presents many challenges for people with complex support needs. Restrictions around access to community services and care should be discussed in-line with the Mental Capacity Act and consider individual circumstances relating to health and wellbeing.

The five key principles of the Mental Capacity Act

  • All adults have a right to make a decision for themselves unless it can be shown that they are unable to make it
  • Everyone should be given all the help and support they need to make a decision before anyone concludes that they cannot make it themselves
  • People are allowed to make what others might think is an unwise decision
  • Any actions taken or decisions made on behalf of someone who lacks capacity must be done in their best interests
  • People who lack capacity must not be restricted unnecessarily

This short video from Hft’s Family Carer Support Service, summarises the key principles

Advice for online review meetings for Education, Health and Social Care

With meetings now taking place online in the majority of situations, it can be difficult for individuals to be placed at the heart of decision-making. We discussed how to make the most of online situations to get a full picture of a person’s situation, needs and wellbeing.

Here are some tips for preparing for online review meetings:

  • Make video recordings with the person you support on ‘good’ and ‘bad’ days as a starting point for discussion around person-centred care and support
  • Create a YouTube channel to upload these videos to as ‘unlisted’ or ‘private’ videos and send the video links in advance to the people attending the meetings
  • Decide who you’d like to be in the meeting, is there a support worker who could enable the person you care for to participate
  • Prepare for the meeting by putting together an agenda or list of items you wish to discuss during the meeting and send this to all relevant people in advance
  • What do you want to get out of the meeting? List your outcomes in order of importance
  • Look back at your agenda throughout the meeting to make sure you are covering every item and make sure you review your planned outcomes at the end
  • Agree next steps. What are the actions and who will be responsible for taking them?
  • Agree a timeframe for the actions to be completed and record the dates
  • You can take a note-maker with you to the meeting, this may be a trusted family friend, relative or member of the Support Collective. This will help you stay present in the meeting and focus on the questions you need to ask without worrying about keeping up with note-taking.

Care for the Carers support

Counselling for adult and young carers: we-can-help/counselling
Carers Cards – includes access to local discounts, as well as discounted parking:

Useful Resources:


Amaze is a charity that gives information, advice and support to families of children and young people with special educational needs and disabilities (SEND) up to 25 in Brighton & Hove and Sussex.
Amaze are offering a helpline for information and advice open Monday to Friday, 9.30am to 2.30pm. Call 01273772289

Place2be Art Room

Place2be Art Room team has just launched a project on Growth in collaboration with WWF which may be a useful resource for school-based staff, teachers and
parents. The activities invite children to explore their roots, environment and how they can grow together with others as a metaphor for personal growth. The project will take children and young people on a journey through nature; they can reflect on the past, feel nurtured in the present, and flourish in the future.

You can download the project here along with our other projects which explore different themes to support children’s mental health and wellbeing activity-ideas-for-families/activities-from-the-art-room/

Hft Family Carer Support

Glossary of terms

Glossary providing explanations and descriptions for some of the key terms and phrases used in the adult social care and learning disability sector.

Disability rights & legal

Over the years, a number of different Acts and Treaties have been passed that protect the freedoms and rights of people with learning disabilities. Find out more about some of the most important ones.