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This morning we welcomed Richard who will be joining the Support Collective as part of a team of volunteers supporting the collective through researching pandemic related resources, local and national support and up-to-date guidlines as well as being an important voice for the group during our meetings. Richard is an artist and musician and has over 15 years of experience delivering workshops and organising events. He is currently an associate artist working for Heart n Soul and has recently published a pamphlet about his experiences supporting neurodiverse artists called D.I.Y. as Privilege: A Manifesto.

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.

Moving into Adulthood

We discussed how Education and Healthcare Plans (EHCPs) can follow someone until they are 25 if the right person-centred educational provision is put in place. Once a young person turns 26 the family can request to have an assessment for Adult Social Care. One family are planning on looking into next steps and what the future may look like. Her daughter has an established arts practice and enjoys her space in the family home. They will be starting the process of putting together a PATH – Planning Alternative Tomorrows with Hope to make a roadmap for the coming years.

Resources:

If your Local Authority takes away your EHCP – https://www.ipsea.org.uk/if-your-la-takes-away-your-ehc-plan

Mencap Easy Read Guide to Social Care Assessments: ER Social Care Assessments 20ppA4

Template letter for requesting an assessment: SC9 Request needs assessment for a person lacking capacity

‘Can I have that in writing?’ – template letter: SC20 Can I have that in writing

Guidance for completing a template letter: SC44 Completing a Mencap template letter

Models for housing

We discussed bringing together different models for housing and living in the community such as supported living, single person tenancies with support and arrangements such as shared-lives.

One family mentioned that Rare Breeds Centre has re-opened. The Centre is run by the Canterbury Oast Turst. As well as being a tourist attraction, they provide live and work opportunities through supported living & residential accommodation.

Resources:

Mencap housing FAQ: https://www.mencap.org.uk/advice-and-support/housing/housing-faqs

What’s it like being a Support Worker?

A family spoke about how they lost a lot of support through Brexit and Covid. They initially received 45 hours per week and are now only receiving 4 hours with one family member providing the shortfall as primary carer. They are now struggling to find support workers with the right skills and attributes to support their daughter.

We will be releasing further films as part of our Family Stories series later in the year which spotlight the vital role specialist support workers play in supporting neurodiverse communities. They will serve as a resource for families and a call to action to government and policymakers to rethink and reform social care and give recognition to carers and support workers. To watch the films in the series so far visit: https://projectartworks.org/resources/family-stories/

If you are interested in finding out more about the role of a specialist support worker, please get in touch with [email protected]

Next Support Collective online meet-up for adults with complex support needs, their families and carers: Monday 28th June, 11am – 12pm. 

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