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  • Carers Week & Learning Disability Awareness Week 2021 “As a sibling carer, I have often felt invisible. Not to my family, who have always valued the role I play, or to my friends who recognise the highs and lows I have, and continue to work through in supporting my brother. Society though can often overlook us as a caring group. We sometimes get lost in wider definitions, such as young carers, or simply adult carers, yet the role of sibling carer is very unique and usually a life-long one. My brother Matthew and I are very close, as are many siblings, but with us, the bond is one of advocacy, challenge and support at a level that is often not felt in most sibling relationships. I am often an advocate and champion for him when he is unable to speak up for himself – or chooses not to. Equally, the way that he has overcome challenges he’s faced, pushes me to consider how I can achieve more and overcome barriers of my own. It’s a symbiotic relationship of equals, even though society often pitches us as very different in our abilities. As Carers Week comes to close, we at the All Wales Forum, alongside our Carer organisation partners, have shared stories about making carers more visible within society. It is our hope that as we start to recover from the impact of the COVID pandemic, we not only see more of our amazing unpaid carers being supported to reconnect with society, but also key groups such as Siblings, being recognised more in their own right. For me, I’ll be looking forward to spending more face to face time with my brother after a year where we have been mostly kept apart. The challenges continue to ensure he is not left behind in re-engaging with his community, and that I too, am supported to feel valued as his sibling and a family carer.” Kate Young Director, AWF.   “My Sister”   I think this piece should start with her, my buddy, my friend. I met Moira when I was still deep into my degree. We met at my workplace, she was a customer, walked up to me, said a shy “hello” and then demanded to try on my glasses. Moira hasn’t left my life since. She supported me through my final year, made me laugh when I felt homesick, teased me when I spilt something on myself and got me back into writing letters. Independent, proud, smart, cheeky, funny, stubborn, kind as no other I have met. Nothing passes her, I can’t even try to fake I’m OK or hide my feelings, she knows. She has a way of talking to me that is so honest, empathetic and straight to the point that it disarms me and yet accepts me. Never passing judgement. Moving away was hard on both of us, we had an established routine, as best friends do, but we worked it out and years later we still have our phone calls, and a long overdue meal that we have both been patiently waiting for. She’s one of the best friends I could have ever asked for and she just so happens to have a learning disability. When we became friends, I don’t think I realised just how uncommon our dynamic was to the general public. People who hadn’t met Moira before, would talk to me rather than her, some would go up to her when she was waiting for me (as usual, I like to take my time in charity shops and she’s a busy-bod, match made in heaven!) and ask her if she was ok and if she was on her own. She would politely reply that she was fine and that she could take care of herself, but it always rattled her. I’ll never forget her saying: “I have a boyfriend, I work, I volunteer, I’ve lived here forever but people still treat me like that, why can’t I just be hanging around with friends”. Fast-forward a couple of years, I’m sat in a room for a self-advocacy training for people with a learning disability. My dear colleague who I was there to support, had just successfully delivered the first part of the training and was now inviting all the self-advocates to think of how their life would be if the Convention on the Rights of Persons with Disabilities was respected and applied. A woman offers to go first and with her supporter she takes the floor. In her native language she tells us about her relationship with her sister, her supporter, her best friend who is translating for her and by doing so is empowering her to have a voice in this room. She tells us about how much she wants to be married and have a child, just like her sister. How much she wants to have her own house and become a mother. How small her future looks to her. I look at her sibling carer, who is trying her best to translate and not get emotional, who is struggling to get the words out and I am moved to tears by the bond that these sisters have built. Article 23 of the CRPD “Respect for home and the family” recognises these sisters to have the same possibilities and opportunities. “The right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized” It is most certainly recognised in law, but is it applied in society? That’s a harder question to answer. We are seeing more and more fantastic services and projects that champion inclusion in this aspect, services such as Luv2meetU, Supported Loving and Gig Buddies and many more local initiatives (charities, families, advocacy groups) around Wales have held events in the past and now have moved their activities online to keep supporting friendships and relationships. But are things changing? It More…

  • 29th of June 13:30 – 15:00 Online Event – book your free place here or below, after some further information regarding the event and the project Caring Communities of Change The project will put learning disability family carers, third sector partners and the wider professional network at the heart of service design and delivery across Health and Social Care in Wales. The All Wales Forum will work in partnership with carer-led network organisations and national third sector organisations to co-produce, pilot and scale up innovative and practical solutions to meet the needs of the families.   What is our goal? To enable Learning Disability families and third sector partners in Wales to develop services that secure rights, enhance physical, emotional and economic well-being and support family relationships, all through enabling learning disability family carers to have an active contribution to society. Break from the Routine We will collaboratively work with families and national organisation to co-produce and provide responsive and flexible alternative offers to respite care. It will provide options for respite care that can be ‘self-funded’ or paid for through Direct Payments. These ideas include – – Exploring and implementing the principles of a Respitality style model in Wales – Using Direct Payments flexibly to access short breaks and respite care -Developing a Staycation network for family carers of loved ones with learning disabilities to swap houses over short periods to access short breaks as a family Progress so far… We have been working closely with North Wales People Together in Flintshire to design a Direct Payments Toolkit, which can be used by parents, carers and professionals to inform uses of Direct Payments to access short breaks and respite care. Part of this work will be testing this toolkit to ensure that it helps make the process of applying for, and using Direct Payments flexibly as smooth as possible. We aim to pilot ideas that give real world examples of Direct Payments being used flexibly to access short breaks and respite by families, in particular accessing varied and flexible breaks through the community tourism network. What is this meeting for? The purpose of this meeting is to – Share – Progress from collaborating partners from the working groups – including what are the next steps of these working groups -An opportunity for other organisations to share from similar examples of work in other parts of Wales following the principles of connecting parent and carers to flexible, self funded breaks in the community tourism network Learn Learning from working groups and other examples across Wales as to – – What works and why? – What doesn’t work and why? – What are the barriers and how will we/have we overcome them? Develop – How do we grow this work further? – How do other areas get involved? Who would we like to talk to? We welcome anyone with an interest, opinion or experiences in alternative forms of respite care and short breaks for families’. We would particularly like to hear from – – Parents and carers -Local authority staff working with carers, people with a learning disability and Direct Payments – Carer led organisations or groups – `Local businesses or community interest organisations Book your free place here. I would like to speak to someone before the event… Feel free to contact us via email at caringcommunities@allwalesforum.org.uk or via 02920 811120 – our office hours are 9am – 5pm Mondays to Thursdays. Thanks, The AWF Team

  • 22nd of June 13:30 – 15:00 Online Event – book your free place here or below, after some further information regarding the event and the project Caring Communities of Change The project will put learning disability family carers, third sector partners and the wider professional network at the heart of service design and delivery across Health and Social Care in Wales. The All Wales Forum will work in partnership with carer-led network organisations and national third sector organisations to co-produce, pilot and scale up innovative and practical solutions to meet the needs of the families.   What is our goal? To enable Learning Disability families and third sector partners in Wales to develop services that secure rights, enhance physical, emotional and economic well-being and support family relationships, all through enabling learning disability family carers to have an active contribution to society. Break from the Routine We will collaboratively work with families and national organisation to co-produce and provide responsive and flexible alternative offers to respite care. It will provide options for respite care that can be ‘self-funded’ or paid for through Direct Payments. These ideas include – – Exploring and implementing the principles of a Respitality style model in Wales – Using Direct Payments flexibly to access short breaks and respite care -Developing a Staycation network for family carers of loved ones with learning disabilities to swap houses over short periods to access short breaks as a family Progress so far… We have gained commitments from some key partners in Powys to explore and pilot options around the principles of Shared Care Scotland’s ‘Respitality’ model of connecting parents and carers with the hospitality sector for short breaks through the Powys based working group. Collaborating partners in Powys will pilot ideas until 2023 to see what works. What is this meeting for? The purpose of this meeting is to – Share – Progress from collaborating partners from the working groups – including what are the next steps of these working groups -An opportunity for other organisations to share from similar examples of work in other parts of Wales following the principles of connecting parent and carers to the hospitality sector for short breaks Learn Learning from working groups and other examples across Wales as to – – What works and why? – What doesn’t work and why? – What are the barriers and how will we/have we overcome them? Develop – How do we grow this work further? – How do other areas get involved? Who can come to this meeting? We welcome anyone with an interest, opinion or experiences in alternative forms of respite care and short breaks for families’. We would particularly like to hear from – – Parents and carers – Carer led organisations or groups – `Local businesses Book your free place here. I would like to speak to someone before the event… Feel free to contact us via email at caringcommunities@allwalesforum.org.uk or via 02920 811120 – our office hours are 9am – 5pm Mondays to Thursdays. Thanks, The AWF Team

Welcome to our website

The AWF is unique among Learning Disabilities bodies in Wales in that it is the only organisation that represents nationally, collectively and solely the views of Parents and Carers of people with learning disabilities. We are an umbrella body for locally and regionally based organisations and support groups made up of parents and carers. Our wider alliance partners share a commitment in working to improve the rights and recognition of parents and carers and families supporting loved ones living with learning disability. The Forum is also governed by parents and carers, ensuring that our client base has a clear input into the strategic direction and core work of the organisation.

The Forum prides itself on our capacity to reach out across Wales and make real changes, including influencing policy, supporting local alliance groups, engaging in innovative projects and highlighting key areas of need that are yet to be addressed fully.

We achieve most of our work through the true spirit of partnership and shared resources, and we believe that in the future years this method of working will not only continue to prove effective in delivering outcomes, but it will also become essential if we are to continue to generate innovative and essential support solutions to families across Wales.

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Advice helplines


Carers UK provides high quality advice and information to carers and the professionals who support carers. Staffed by experts, they have years of experience of dealing with the problems carers face.

The Advice line is open Monday to Friday, 10am – 4pm, tel: 0808 808 7777

mencap cymru

Mencap WISE is a free service that offers support, advice and information in English and Welsh. The service is available to everyone in Wales, whether you are a person with a learning a learning disability, a family member or a friend. They can give you the information you need to understand the rights of people with a learning disability and to support them to access services or challenge decisions.

The Mencap WISE Helpline is open Monday to Friday, 9am – 5pm, tel: 0808 8000 300

Community Groups

Brecon Carer Groups
Bridgend Parent and Carer Group
Caerphilly Carers Group
Cardiff and the Vale Parents Federation
Ceredigion Carers Forum
Community Lives Consortium Relatives Forum
Conwy Connect – Carers
Denbighshire Carers Forum
Learning Disability Flintshire
Gwynedd LD Carers outreach
Knighton Parent Carer Group
Powys Carers Groups
Mencap Carers Support Group,
Anglesey Mencap
Carmarthenshire family support

Merthyr Carer Action Group
Monmouthshire Carers Group Montgomeryshire Family Carers Centre
Montgomeryshire Open Door parent carer group
Newtown Newtown Carers Group
Parents for Change, Newport
Pembrokeshire Carers Group
Radnor Carers Group
Rhondda Cynon Taff Carers group
Smile Parent Group
The Carers Outreach Service, Bangor
Welshpool Carer Group
Ystradgynlais Parent Group
Llandrindod Wells Carer Group

Mencap Carers Support Group, Anglesey

Denbighshire Carers Forum

Learning Disability Flintshire

Ceredigion Carers Forum

Wrexham Carer Group

The Carers Outreach Service, Bangor

Gwynedd LD Carers outreach

Conwy Connect – Carers

Newtown and Welshpool Carer Group

Montgomeryshire Open Door parent carer group

Montgomeryshire Family Carers Centre

Radnor Carers Group

Knighton Parent Carer Group

Brecon Carers Group

Pembrokeshire Carers Group

Ystradgynlais Parent Group

Mencap Carmarthenshire family support

Merthyr Carer Action Group

Monmouthshire Carers Group

Rhondda Cynon Taff Carers group

Caerphilly Carers Group

Community Lives Consortium Relatives Forum

Bridgend Parent and Carer Group

Parents for Change, Newport

Cardiff and the Vale Parents Federation