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17th November 2022
Meeting Notes:
Josh- overview of AWF and our CCC project:
Caring Communities of Change is an innovative project putting learning disability family carers and their relatives at the heart of collaboration in service design and delivery across Health and Social Care in Wales. The AWF works in partnership with regional carer-led networks and engages our third sector colleague organisations to co-produce and scale up innovative, practical and different solutions.
Collectively we will actively target three core areas of change that have been brought to our attention by family carers as areas that have a need for improvement, identifying different solutions by generating innovative pilot schemes.
These three areas of change are;
Transitions – ‘All Moves Matter’
Respite – ‘Break from the Routine’
Doing different things – ‘Creative Carer Communities’
These co-designed and co-owned initiatives will ultimately enable family carers and their relatives to meet their well-being outcomes more creatively and effectively, both within their local communities, and at a national level, across the whole peer support network.
https://www.forum.allwalesforum.org.uk/caring-communities-of-change/
Respitality Pilots:
- Respitality is the idea of linking respite with the tourism and hospitality sector to access a short break
- It could be a solution to the current pressures facing social care and particularly the lack of staff that we are currently facing
- Youth Hostel Association (YHA)- We wanted to begin to explore what respitality could look like for learning disability families in Wales. We have worked with one of our partners the YHA who invited a group of parent carers to one of their sites in the Brecon Beacons. They wanted this group to visit the site and explore what opportunities and possibilities it could offer their families. The group had a tour of the facilities including a lovely, converted farmhouse that could make for an ideal rural retreat for a family holiday, school trip or an activity break in Wales. Our carers’ feedback will help YHA better understand families’ needs and highlight what YHA are already doing to support families. At the same time our carers got a chance to review this venue before visiting again, possibly with their families!
- Elidyr Communities Trust (ECT)- We were also given the opportunity to take a group to visit the ECT site in Carmarthenshire. The group were given a tour of the site and take part in some of the activities delivered by those that attend the trust such as card printing, soap making, the orchard etc. ECT are interested to explore how this site can be used for respite for families and what would need to be done to make this successful.
Elidyr Communities Trust:
- Elidyr Communities Trust is a charity which has colleges, supported living and community living provisions.
- They are exploring some future funding to provide respite pods. They want families to be part of the development journey and hear from parent carers so they ensure they are building the right thing.
Sibs:
- Respite project for adult sibling carers who often take on a variety of roles
- Historically, it has often been difficult for sibling carers needs to be taken seriously and this still continues today
- Sibs have some funding from Carers Trust UK to run a project for adult siblings of people with Autism. This includes an 8-week course for siblings to have a go at something new such as laughter yoga, painting, creative writing and much more. It also includes a retreat break away. This project is also planning to provide hampers for up to 20 siblings which will include things such as mindfulness books, tea, cinema vouchers, bath bombs. A notebook will also be included in this hamper to gather some feedback and evaluate the impact of the hampers.
Bubble Hub:
- Bubble Hub is an initiative that aims to measure how accessible places are. Who measures accessibility? This group wants to be part of the beginning process of the planning of a new building or service to ensure it is fully accessible
- This group also wants places to be completely honest and transparent about how accessible somewhere is.
- Euans Guide- an incredible tool to link in with, we don’t want to re-invent the wheel. https://www.euansguide.com/
- Mandy has been part of the respitality pilots with YHA and ECT “visiting the projects made me feel like there is hope for the future”
Further discussion points:
- A break for somebody can mean so many different things and comes in many different forms. For some it could be a break away from the person you care for, for some it could be a break away as a whole family, for some it could be an hour or two which somebody in to do some cleaning etc.
- Inclusion is so important. Specialist services can divide families
- “I want to do things with my whole family too”- Respite isn’t just about time away from the person you care for
- Local authorities across Wales all work differently, could we have a one-page easy read document from Welsh Government so that each LA is on the same page?
- Childcare offer isn’t going to cover the needs of disabled children.
- “One day it won’t be called Respite, it will be family life & equity.”
- Looking at winter money that will be made available, can we utilize support available e.g teaching assistants, personal assistants to support outside of those structures?
- is this forum just addressing holidays with direct payments? Our council isn’t even providing the basics like day centers. – The AWF project wants to explore families having voice, choice, and control about the time of respite they would like to receive. We want families to have access to a “menu” of choices and ways these can be accessed from direct payments, pooling those direct payments, statutory provision and other funding.
Actions and next steps:
- Send out dates for next meeting in April and source partners that able to demonstrate positive inclusive provisions to short breaks
- Share ideas and tools developed through co-production work through AWF website and digital forum
- AWF to research the availability of inclusive childcare scheme provision and signpost to information
- Send out meeting notes to network partners
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