Initial focus areas:

• ·Reimagining - Governance & Structure: We envision a model run by paid staff but governed by carers, ensuring it remains relevant and responsive. Communication and engagement will be key to establishing a strong, inclusive membership.

• Breaks - Delivering and Growing Breaks: Expanding the availability of breaks for parents and carers, while growing the model to reach more families.

• Together - Building Systems & Partnerships: Strengthening connections and partnerships across Wales to improve regular access to breaks.

We believe our economy and society should work differently, putting people and planet first. Cwmpas is a development agency working for positive change.

There will be a series of focus groups with families from January to refine the ideas around governance. We feel strongly that when possible, we want to compensate family carers for their time and expertise so there will be a £75 payment for a morning of your valuable time.

To express and interest, please contact josh@allwalesforum.org.uk.

Best,

The AWF Team

CC4LD supports people with a learning disability across North Wales. Within our Transition service, we support young people 14-25 and their families. We focus on three main workstreams: Information access, youth sessions and person-centred planning. We aim to empower our members to take control over their next step options to ensure their right to a fulfilled life.

Find out more and connect with Conwy Connect on their website - Conwy Connect

Find the toolkit and more information on Where I Want To Live here - Home - Where I Want To Live

The conclusions from the report have been drawn from the information gathered since 2020 and the hope is that the lessons learned through piloting and testing approaches through partnerships and co-production will give us collectively a strong foundation on which to build.

The conclusions that are directing the path forward are:

1. Carers and families want ownership and agency – supported by traditional partnerships.

2. The benefits of alternative models of support can, and should be shared

3. There is lots of excellent practise in Wales; let's either make it easier to access

4. Some of the tools to access any traditional or alternative models, need to evolve in -line with an evolving need and respond to current challenges

Objectives moving forward.

1. Improve access to information for carers wanting to access a short break

2. Grow and diversify learning networks

3. Explore and communicate economic benefits

4. Explore governance options for future models

5. Celebrating learning

We are eager to talk to families and partners who want to be part of this on-going conversations and would value your input when we explore the tentative next steps.

You may have found this link on our Newsletter, if you haven't, you can sign up for the future by emailing caringcommunities@allwalesforum.org.uk

As always, we thank our carers, for their incredible work in their roles, for being pillars of our society and for somehow finding the strength, creativity and time to make a difference for others by being included in policy, government and research work. We wouldn’t be able to do anything without you.  

Last month, we launched our Break from the Routine Report to mark a milestone in our short breaks and respite work. The purpose of this event was straightforward: share what we’ve learned and rally a motivated network. 

Over the last five years, families have faced immense pressures on top of the already challenging roles of being a parent, sibling, or carer. We’ve seen these pressures firsthand, and to say it’s been tough feels like an understatement.

Despite everything, each of you connected to this project has put in incredible effort, and for that, we thank you from the bottom of our hearts. 

Resilience is often mentioned when talking about parents and carers. We recognize that while resilience is admirable, it doesn’t change the fact that families need real change—and quickly—to get the breaks you deserve, ones that fit around your life rather than the other way around. 

The challenges to accessing breaks are significant but not insurmountable. Our project has identified three key issues: the lack of accessible information about breaks, inconsistent availability based on location, and the difficulty of arranging replacement care. These barriers can leave carers feeling isolated and without essential rest.

However, the response to the Break from the Routine theme has been remarkable, and there’s good reason for optimism. The All Wales Forum was founded on the belief that there’s strength in numbers, and we’re harnessing that strength to improve the future of breaks for carers. 

A Community-Led Short Breaks Cooperative: 

Our vision is to create a community-led cooperative that not only supports carers but strengthens connections across communities. It’s a simple idea, but one with enormous potential. We believe that by building this cooperative together, we can ensure that carers have access to flexible and frequent breaks that genuinely fit their lives. This is not just about time off; it’s about forging stronger, supportive connections within our communities. 

Our initial priorities for this cooperative include: 

• Reimagining - Governance & Structure: We envision a model run by paid staff but governed by carers, ensuring it remains relevant and responsive. Communication and engagement will be key to establishing a strong, inclusive membership. 

• Breaks - Delivering and Growing Breaks: Expanding the availability of breaks for parents and carers, while growing the model to reach more families. 

• Together - Building Systems & Partnerships: Strengthening connections and partnerships across Wales to improve regular access to breaks.

  
  

We’re inviting you to share your insights, experiences, and ideas on how to bring this cooperative to life. Your knowledge is invaluable in shaping a powerful voice in Wales that prioritizes the well-being of carers and connects families to the incredible Welsh hospitality and leisure sectors. 

Together, we’re reimagining what meaningful breaks can look like—accessible, flexible, and community-driven. By uniting our voices and sharing our insights, we’re building a cooperative that puts carers first, weaving connections across Wales that support and empower each of us. Thank you for being part of this journey. Let’s keep moving forward, transforming breaks from an occasional luxury into a regular, reliable part of life. Stay tuned, stay connected, and let’s make this vision a reality—together! 

Josh – Projects and Partnerships Manager 

As we moved into a more digital society, the Forum has had to adapt and evolve rapidly to ensure we communicated effectively online whilst keeping that personal relationship with carers already known to us and connecting with new carers. 

As our digital presence has grown so has our learning about effectively communicating with family carers from different backgrounds and we took this opportunity to increase our existing networks. 

Some examples of how we have developed our communication to better connect with family carers: 

• Evening sessions: we are aware not all family carers can participate in day events and activities and evening sessions are more accessible to those carers. 

• Multimedia communication: If Carers sign up for our events but cannot participate, they will still receive Meetings Notes and can send us back questions, their views and additional information. Carers can get in touch with us through social media, phone, email or we can organise to meet in person. We also joined Instagram to better communicate with younger carers. 

• Physical presence: Wherever we can we attend events and coffee mornings, these in person occasions are precious and vital to maintain relationships and build trust with traditionally underrepresented communities we are aiming to connect better with and improve their representation in government and policy 

• Easy to read/understand information: we have revisited our Communication Plan and have been over time changing our language to avoid jargon, acronyms and complicated vocabulary, we also make a point of sharing the easy-read version of any legislation or information published. This is in the effort of being more accessible to anyone who better understands through easy-read and also for family carers whose first language isn’t English. 

• Inclusive language: Beyond the general rules of inclusive language of people with disabilities, we have also made a conscious effort to make sure our language is also inclusive of Dad Carers, LGBTQIA+ carers and carers from traditionally underserved communities. Language is important and we want to ensure that everyone sees themselves reflected in our words.

Over the past year, we have been sharing that learning in different spaces, such as with organisations, services, third sector and research. 

We delivered a workshop at Cardiff Council’s Community of Practice session; we have also supported Children in Wales with a Childcare Consultation and ensured family carers’ of people with learning disabilities voices were heard on this important topic and their time valued. In the field of research, we are supporting and participating in different pieces of work by sharing how to best reach family carers in our experience, including work with Cardiff University, Public Health Wales and wider UK initiatives.

We hope all the shared learning and conversations will encourage the engagement of carers from all backgrounds, including families from traditionally underrepresented communities and that their time will be valued, with their efforts and time being recognised and appreciated. 

But as we know with good practice, it isn’t the finish line, but part of the journey, so there is always more for us to learn and ways for us to improve. In 2025, we are aiming to keep improving our reach and expanding our network to make sure they include as many learning disability families as possible as we keep raising the profile of the amazing contribution Carers from all backgrounds give to our society. 

We are always here to listen to your ideas! If you have questions, suggestions or simply fancy a chat on this topic, please get in touch with Gwen@allwalesforum.org.uk 

Please find a brief overview of just a handful of consultations we have responded to over the last year: 

Welsh Government- Children missing education database 

We called for national standards in reporting to ensure consistencies so different local authorities do not have their own ways of working that would help to share necessary information between services. We also mentioned that this consultation fails to account for people not in mainstream education settings. There needs to be further consultation to identify these families. Clear guidelines are needed on the roles & responsibilities between health and local authority. Information may need to include any protected characteristics which may explain why somebody is not in education. This could also include young carers with “unauthorised” absences if their role is not recognised.  

Welsh Government- Proposed changes to the Putting Things Right process 

Complaints process costs families a lot of money who are already facing financial hardship. Families who lodge a complaint, proceed to the ombudsman stage to hear nothing further. Llais do not have the capacity to help the amount of people that need it. Families need constant communication during the process. Reasonable adjustments need to be included. Proposal for awareness training around unpaid carers and learning disability amongst staff. The consultation proposed smaller timescales but are they realistic given current pressures.  

Welsh Government- Raising the weekly maximum charge for adult non-residential care and support 

The AWF rejected the proposal for an increase. There are huge pressures within social care, but this isn’t the answer to address the problem. The proposal to charge people more but there is no increase in any other financial area of a person's life including carers allowance. We said that no changes should be made until a proper conversation is had with the people this will affect. Local authorities must be clear what their duties are and not be open to their own interpretation to suit their own current financial position. By increasing this charge, there is a possibility this will have a negative knock on affect to other services such as an increase in demand for GP services, financial services, mental health support etc. we urged ministers to reconsider their recommendations given to them by local authorities son this issue and return to those that were recommended by the expert panel of the National Care and Support Service where it was stated that ALL potential fund generating options are put on the table collectively and those involved in using these services are heard and included to design a solution.  

Welsh Government Digital Inclusion Policy   

The Welsh Government was looking to know thoughts on existing digital inclusion provision in Wales. We agree it is great Digital Communities Wales has been available to provide free advice and assistance for the third sector to further our reach to families across Wales using technology and the internet. However, there is still a heavy reliance on information being shared online and still not reaching many people who are not online. These include older people, those who are currently facing huge financial hardship and having to make decisions to cut back spending which can include internet and also people who do not speak English or Welsh. 

Going forward, we would also like to see:  

• Not as much of a heavy reliance on everything being made digital. Digital inclusion needs to go alongside in person provision which gives people voice, choice and control over the support they wish to receive.   

• Information about that digital inclusion provisions available within the community in spaces people access such as pharmacies, supermarkets, libraries, school bulletins etc.   

• More information available around what support is available for people to get help with the cost of data and broadband services. Is there a social tariff that could be made available for vulnerable people and lower income households?  

• Further information, advice, assistance and protection from scams and potential and existing victims particularly unpaid carers.   

 Please remember, if you would like to get involved, please do not hesitate to contact me at grace@allwalesforum.org.uk we always want to ensure more parents voices are fed into consultations to help shape policy and services.

Upcoming consultations in early 2025: 

Discover Your Role 2.0 Action Plan for Future Public Involvement- 13^th January   

Promoting a Resilient and High Performing Planning Service- 17^th January  

Q: There are very limited resources at the moment, how do you manage families' expectations when they are having these conversations?  

A: We encourage families to have conversations regarding their children's future earlier on, so there is time to prepare. And there is also time to research what is available around you and time to get used to the change. This is part of why the toolkit was created to facilitate a conversation around your kitchen table, like we all do. In today’s event we will see an example of creative solution to transitions which has given the families and the individual complete voice, choice and control over the project. These times are hard, and we are all aware that resources are limited but that doesn’t mean we stop moving forward and looking for solutions. It’s also important to note that often if you don’t have these conversations in due time, you may end up having them at a time of crisis when time and solutions are limited. Whereas a plan transition, that starts with a simple conversation, where everyone knows what's happening is, is really, really key. 

Q: We do know that there's issues with capacity and options when it comes to finding suitable places for people, especially people with very complex needs to, to live. I just wondered what the plan was longer term to use some of that information to kind of improve that outlook a little bit. 

A: Specifically with people with severe needs. I think the more complex the disability, the higher the need for planning. I mean that that's the one thing that we found. You know, the more severe the disability, the more important it is to find out what options are available and where, because sometimes those options are not available near home. I think one of the one of the things I forgot to mention about the toolkit that that that I think is very important to realise is that that young people will learn disabilities have to make compromises in the same way as we all make compromises. You know, I'd love to live in a flat in Mayfair, but you know, that's not necessarily an option just now. But for a lot of people, you know, the when they make choices about how far they want to live from their family, whether they want to near live near the sea or a particular store or they want to be in town or the countryside, you have almost to create a range of options. 

Q: Is there a link to access the toolkit please? 

A: Absolutely! The more people use it the better - Home - Where I Want To Live 

Q: Are you going to work with schools? 

A: Yes, absolutely. Education in terms of all the stakeholders is probably the what I call the the low hanging fruit as far as our chart is concerned, because it provides a framework and and it is an an organised set up. 

Q: is the toolkit bilingual? 

A: Yes, English and Welsh and Makaton. Our ambition is eventually to to to have Urdu, Arabic, to have all the languages that are spoken in all the various communities in the United Kingdom. 

Conwy Connect 

Q: As we know, there's a lot of families who still have children over the age of 25 living at home because like I said, it's a very emotive topic and takes a long time for that planning. I was just wondering if those families were to approach you, obviously I know your service is sort of cut off at 25, but is there anywhere they can go for that sort of further help and support? 

A: We tend to stretch it to 26 but I do agree that after 25 there seems to be a cut-off at that moment. It's about I would always support to try and meet up with members and other people who are going through that or coming to things like the Stand North Wales event where there is a mass amount of people there to have the conversations once or once or twice a year to say, you know, these are all the services at the moment in North Wales over 25. And people are only really ready to transition when they're ready to transition. 

Q: What age would you suggest looking into / preparing for transition? 

A: I think, you know, the earlier the better. Is there too early? Well, I'd say there's always things we need to understand about our young person's journey if they're in specialist education until 19. Broaching the conversation at 15/16 can be very constructive and, this is only purely my experience, sometimes starting those conversations too early 14/13 when they are in specialist until 18/19, you know, can become almost slightly overwhelming for them. But it's really important to build up to the conversations of, you know, 13/14 saying, what do you like? Where do you like being in? Within the forest or do you like to be maybe closer to the train station? Etc. 

Q: Are there any services across Wales that would actually support both the young person and the parents? 

A: There aren’t currently any charities doing this kind of service, ideally this would sit with social services who would support the entire family during this crucial period of life. The All Wales Forum as part of our Caring Communities of Change project; transitions, holistic transitions is a huge topic. So often families feel like they're being dropped off a cliff when it comes to transitions, when it comes to information, when it comes to support. Some of the work we have done around this topic has produced a group, the Home from Home Network, that's working on these specific issues. We've been supporting and working with a group of parent carer who are building a tool kit to address these kinds of gaps in the knowledge and in the support. 

Dream House Swansea 

Q: How would you go about setting up a project like this within North-East Wales? 

A: My colleague Kath is already talking to people in North-East Wales so whoever is interested can get in touch with Kath, from our side of side of things as a community, community LED housing project, what we need is a core group that that will get together and inform to us. You are the experts, and you're the ones with the lived experience. You know what is not going to work, you know what's needed. And we try and take a holistic approach, but also a person centred approach as well. You can get in touch with us here - For South and West Wales - claire.white@cwmpas.coop and for North and Mid Wales - kathryn.robinson@cwmpas.coop 

Respitality – All Wales Forum 

Q: I just wonder whether there is the potential for actually getting young people away from their family group with other young people for a weekend to give everybody a bit of a taste for the young person, a taste of independence and the, the parents, the carers, at least a taste of what it's like to be, to be able to let go even for two days and knowing that their loved ones are cared for. 

A: I think the thing that we're that's a good point and I think that it does link through our SEIBIANT project. Like I said, it's very small, but we're very proud of it. We've gathered some information just kind of, you know, passively around what people want. Some people want to go away as a family. They've never been able to do that before and it gives them that opportunity just with a little bit of extra support. Some people have told us they want to have a break on their own or with their other half or with all their children, who are sibling carers themselves and can support. Sibling carers who aren’t recognised enough and are kind of unseen but who are crucial in the life of their sibling who has a disability. So, yes, absolutely I agree with you there is potential to do more as they are closely linked. 

https://youtu.be/Vd2dmeslwOA 

 You can learn more about Dimensions on their website - Dimensions | Supporting People with Learning Disabilities & Autism 

Paul’s contact is paul.seller@dimensions-uk.org 

To contact the central Wales Office - Phone: 0300 303 9030 

Contact Cymru are so pleased to be launching the new 'Claiming with Confidence' service - offering 1-1 benefits advice and financial support to parents and carers living in Conwy and Gwynedd. 

If you live in the area, you can now book a free, confidential appointment with our expert adviser to get personal, practical help, including benefit checks and support with filling out DLA and PIP forms.  

This new service is funded by the Welsh government and run in partnership with All Wales Forum of Parents and Carers. - AWF.

Book your free appointment here: https://contact.org.uk/cymru/claiming-with-confidence/ 

Don't live in this region? There are lots of ways Contact Cymru offer support, including the telephone advice line. For more information visit https://contact.org.uk/cymru/ 

Judith Dobson is the contact for Conwy and Gwynedd and can be reached at Judith.dobson@contact.org.uk  

For South Wales or general information contact sophie.barker@contact.org.uk  zoe.bowen@contact.org.uk  

The Short Breaks Cooperative is a new idea, led by carers but supported by professionals, to make it easier for families of people with learning disabilities to take regular, affordable breaks. 

There is strength in numbers. We aim to use this strength to improve the support, availability and access to regular short breaks across Wales. Become a member and join us in reimagining breaks, together. 

Update: As planned, the Short Break Cooperative Focus Groups have taken place, and a guiding document has been produced. As part of that work, we launched a Market Needs Analysis Survey which has been completed by 150+ carers and partners.  

We have now planned a series of Engagement Days across Wales for October with more dates and locations to follow… 

Upcoming events: 

Explore, Wrexham – Friday 3 Oct, 10:30–2:00 

Scolton Manor, Pembrokeshire – Tue 8 Oct, 10:30–2:00 

Tynyrhyd, Ceredigion – Wed 15 Oct, 10:30–2:00 

What to expect on the day: 

-A relaxed day out with lunch provided 

-Explore venues that could become future break destinations 

-Meet other families, share ideas, and shape something new 

-Connect with local businesses, providers, and partners ready to help build it 

Book your free place here (travel support available): 

https://forms.office.com/e/zZ64WWzRW4 

The Behaviour Support Hub based in Pontypridd, they cover all Wales and support parent carers of children with neurodiversity. They support families with Health and Education processes, parental wellbeing, and strategies to manage. They have also a Dad's peer support group starting 26th September in Pontypridd all info on the Facebook page  Behaviour Support Hub – Support for Parent Carers and Schools info@behavioursupporthub.org.uk  

Shared Lives Plus, UK membership charity for more than 6,000 Shared Lives carers, 150 Shared Lives schemes and a growing network of over 25 local Homeshare organisations “Stability, relationship-based care, ordinary life, the ethos that everyone has something to share is really what Shared Lives is all about”: Our Shared Lives Programmes - Shared Lives Plus 

The Belay Foundation, UK charity helping families whose children have suffered early life trauma. They offer practical help to families whose children have been through the care system, such as adoptive, SGO and kinship care families, and helping everyone supporting them. Their website has lots of resources - www.thebelayfoundation.org.uk  

North Wales Together, seamless model of learning disability services based on what matters to the individual. Part of the four transformation projects known as the Learning Disability Transformation Project in North Wales. Lots of information and resources on the website, including a Direct Payment Toolkit created with the All Wales Forum (find toolkit on the homepage by scrolling down) - Home - North Wales Together 

The Good Life Alliance, a Wales-based alliance of individuals and organisations with three aims: 

-Bringing people back home from long term hospitals and other institutions 

-Improving Local Services 

-Promoting People’s right to choice and control 

Find out more on the website: https://goodlife.wales/ 

Caring doesn't end, even after your loved one has passed. All your knowledge, experience, love... you story stays with you. If you are ready to share that story with us, we are here to listen and to learn. To make it better for people with learning disabilities in the future. 

The study is led by Marie Curie and the University of South Wales and is being supported by us and similar partner organisations. If you'd like to have a chat with us to reassure you about the process of The READY Study , don't hesitate to drop us a message.  

If you have a bereaved family member and want to share your experience to support this project, please get in touch at the link below 

https://www.readystudy.uk/ 

https://j9py6cj9to3.typeform.com/to/LQuEEsUn