Online family carer community

Topics discussed

• Useful resources
  • Transition into adulthood – The Down’s Syndrome Association has created a Transition into Adulthood guide, packed with useful information for young people moving into adulthood. While written for those who have Down’s syndrome, much of it will be helpful for anyone supporting a young person with a learning disability. Find out more. 
  • Finding support – Many parents tell us it’s hard to find counsellors who understand the challenges of SEND parenting. The Counselling Directory may help you connect with specialist counsellors who have this experience.
  • New Forest Disability Information Service 
  • Princess Royal Trust – Portsmouth
• July's meeting
  • Ongoing need for clear information and planning around future care, particularly in the event of a parent’s death
  • Parents are finding it difficult to locate knowledgeable specialist counsellors who understand SEND parenting. If you are looking for specialist counsellors, you may find the Counselling-Directory useful
  • Complexities when care is funded by a different local authority, including delays, missed opportunities, and additional family stress
  • Concerns around future funding structures and the impact of political changes on services
  • Ongoing difficulties in recruiting and retaining appropriately skilled and motivated support staff
  • Frustrations around professionalism and communication within social care services
  • Desire for clearer guidance on the transition from young person to adult services – including key contacts and next steps
  • Signposting to relevant counselling resources, including tips for finding the right professional support
• August's meeting
  • Carers’ assessments – experiences vary greatly by area
  • Capacity assessments – concerns that capacity is not always assessed correctly, with little explanation given
  • Lasting Power of Attorney & Appointees – some people had arrangements in place, others did not
  • Support levels – carers reported reduced support, e.g. EHCP applications being refused where they would previously have been approved, and fewer services sustained in adult support
  • Administrative burden – high levels of admin and energy needed to support someone over 18 claiming benefits. Proving identity and medical information is particularly difficult
  • DWP processes – seen as unhelpful and overly complicated. Concerns about incorrect payments leading to debt and unnecessary stress
  • Emotional impact – no support for carers dealing with the psychological strain of describing loved ones at their worst in benefit forms
  • Lack of voice – many carers feel invisible once their child turns 18, particularly when capacity is assessed but carers feel this does not reflect reality
  • Frustrations with services – organisations often fail to follow through on promises, and lack accessible contact methods such as phone numbers

  Resources discussed:

  • New Forest Disability Information Service 
  • Princess Royal Trust – Portsmouth
• October's meeting
  • Benefits system – carers find it difficult to navigate, with forms asking for intrusive medical details that feel unnecessary.
  • Emotional impact – completing benefit or Blue Badge applications is highly distressing and can deter carers from claiming entitlements.
  • Financial planning – carers want clear guidance on how leaving money to loved ones after their death affects benefits, and how to do so safely.
  • All About Me passports – revisited from the last session and reviewed further.
  • Wills and trusts – strong interest in a future information event, ideally delivered online due to travel challenges.
  • Kinship carers – one member shared it was Kinship Carer Week and introduced the term to the group.
  • Guardian’s Allowance – a benefit for kinship carers that is not well publicised; one carer discovered it via Martin Lewis and successfully claimed.
  • Information gap – carers expressed a wish for a clear, accessible ‘benefits bible’ to help navigate complex systems.
  • Accessibility – many existing resources and guidance are not written in user-friendly or easy-to-understand language.
  • Wellbeing – carers discussed the positive role of humour in maintaining resilience and supporting their loved ones through challenges.

  Resources shared

  • National Autistic Society newsletter – highlighted for useful articles.
  • Minstead Trust website
• November's meeting

  Topics discussed

  • Hampshire Parent Carer Charter – introduced and explained.

  • Complaints procedures – attendees were advised of the process in each organisation and how it can help address concerns and resolve issues.

  Resources shared

  • Forthcoming session in the New Year about Trusts and Wills – information provided, no additional resources signposted.