November 2021 Support Collective Round-up: Adults with complex support needs, their families and carers
Today we welcomed our first support collective member from Chile, Emily Baines our new Creative Programme Coordinator, and Sarah Dunne who is working alongside Esther in a job share as Support Collective Lead. Sarah will normally work on Mondays and Esther will normally work Mondays and Tuesdays.
We started off with looking at our Shared Ways of Working and principles for coming together online providing a safe place for individuals, families and carers to share their experiences and offer mutual support. We revisit this from time-to-time when new members join.
Transition and Change
Members shared some of the challenges of the changes and transitions that their families are experiencing. One family described that their daughter was due to move to a new residential provision, but there had been ongoing delays, uncertainty regarding funding and problems with the NHS Continuing Healthcare (CHC) funding assessment process. This insecurity is stressful for all involved and makes planning for the future problematic.
Another family described their struggles in securing a Personal Health Care Budget (PHB) for their daughter who requires 2:1 support. Initially the PHB provided so few hours of support that it was impossible to recruit carers within budget, in an area where rates of pay are high; meaning the family member had to give up their career when their daughter left school. This led to an honest discussion about how some caregivers have had to give up meaningful careers when their children reached adulthood and how this had impacted on their identity and own wellbeing. Which is a topic we can perhaps revisit in more depth in future meetups?
One member raised the issue of exploitation of family carers and explained if you are no longer able or willing to provide care then a needs assessment should be completed, and all eligible needs met. They described how they had done this as an exercise to ascertain the impact on funding and determine what needs were considered eligible for support. Further information can be found in the resources links below.
NHS Continuing Healthcare (CHC) assessment process
We discussed the lack of transparency of the CHC assessment process and how information and guidance was lacking from the CHC teams in Surrey and Sussex. One family described how the CHC assessment was completed online without their daughter present and that the assessor had no knowledge of their daughter who requires 1:1 support; she was deemed ineligible for CHC funding despite having a high level of need in many of the Decision Support Tool domains.
The same family was incorrectly told they could not bring anyone else to the CHC assessment; we discussed how it can be helpful to bring someone who knows the individual professionally, or another carer, or an advocate to the assessment. It was raised that parents and carers may have their own access needs which should be considered. In this case the family have a right to appeal the CHC decision and also make a complaint about the process. Beacon CHC offer 90 minutes free advice and if you live in East Sussex you can have the support of an Independent Health Complaints Advocate (IHCA) from The Advocacy People.
Support Collective recommends:
Christmas tips for autistic people and their families: https://www.autism.org.uk/advice-and-guidance/topics/leisure/christmas/tips