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This month we met with families and carers supporting children and adults with complex needs.

At our online meet-ups were joined by families caring for young children and adult age children in the family home. We also welcomed families and carers who, when visitation restrictions during the first lockdown took hold, decided to bring loved ones out of residential care settings to live back with them in the family home.

Our attention turned to exploring accommodation and housing options for longer-term care. We discussed the shortage of options presented to people with learning disabilities and more complex needs. Residential care settings are often presented as the only option and are often miles away from friends and family. With the news this week that six care homes caring for people with profound learning disabilities within Sussex will be closing due to scrutiny from the Care Quality Commission (CQC) and no alternatives presented, families are being left in very difficult situations. Our thoughts are with the residents, families and carers who have built deep and meaningful relationships in these settings.

We urge the CQC to join up their work with senior decision-makers tasked with the role of commissioning services within Health and Social Care to ensure new models of residential housing and care meet the exacting standards. These models must put the needs of people with complex needs and their families at the centre. We oppose the confinement of people with learning disabilities and complex needs in Assessment and Treatment Units.

Below are resources gathered in response to the issues and questions shared in our June meet-ups.

Learning Disability and Autism Housing Network Charter

The Learning Disability and Autism Housing Network (LDAHN) – a coalition of twelve housing associations – launched a Charter recently calling for action to address the barriers for new, sustainable quality housing for people with a learning disability and/or autism. https://www.glh.org.uk/wp-content/uploads/2021/03/LDAHN-Charter.pdf

Housing Toolkit – Easy read guide to choosing a place to live – July 2021 (An easy read guide to choosing a place to live – A guide for people with learning disabilities in East Sussex

Navigating care at home

How to obtain a Direct Payment via Adult Social Care: https://new.eastsussex.gov.uk/social-care/paying-for-care/guide-to-direct-payments/what-are-direct-payments

Personal Health Budgets via Continuing Healthcare: https://www.england.nhs.uk/personal-health-budgets/personal-health-budgets-in-nhs-continuing-healthcare/

My loved one’s package of care is being cut, what should I do?

Using the Care Act 2014 to get the right support: https://www.hft.org.uk/our-services/family-carer-support-service/fcss-updates/care-act/?_sf_s=care+act

How to challenge decisions around care (this resource from Mencap also features useful factsheets relating to benefits and Care Act assessments.): https://www.mencap.org.uk/advice-and-support/social-care/challenging-decisions-social-care

Disability Rights

Disability Rights UK have launched an online handbook providing in-depth, comprehensive guidance on the benefits system, explaining how social care operates around the UK and includes information about other services and resources for disabled people: https://cpag.org.uk/shop/subscriptions/disability-rights-handbook-askcpag

For a printed version visit: https://cpag.org.uk/shop/other-publishers/disability-rights-handbook-202122

Shared Lives

This month Esther met with Shared Lives East Sussex Service Co-ordinator, Matt Holmes to find out more about the initiative. As well as linking people with learning disabilities with carers locally who agree to share their home and provide paid care, Shared Lives providers also provide respite care. For further information visit: https://1space.eastsussex.gov.uk/Services/1503/East-Sussex-Shared-L (Referrals can be made via your social worker.)

Resource for Children and Young People

Housing options for young people with SEND

Amaze are hosting an online session for parents of young people with SEND, aged 16-25 in East Sussex. The session will focus on housing options for young people as they transition into adulthood. Thursday 8th July, 10am-12pm midday using Zoom. Register here or contact [email protected] This workshop will be re-run in the autumn term. We will share details as soon as they are announced.

Hello Parents & Carers Session ‘LIVE’ – Tips and ideas to support your child through their pathway/journey to the world of work. The ‘Hello Future’ Initiative begins on 12th July run by a partnership of local organisations including Careers and Enterprise Company and Coast to Capital: https://www.eventbrite.com/e/hello-parents-carers-tickets-151645248019?utm_source=eventbrite&utm_medium=email&utm_campaign=post_publish&utm_content=shortLinkNewEmail

Shared by the Support Collective

Working mums website listing jobs for home-working: https://www.workingmums.co.uk/jobs/

National Autistic Society latest guidance, updates and resources on coronavirus for autistic people, their families and professionals: https://www.autism.org.uk/advice-and-guidance/topics/coronavirus

Understanding Pathological Demand Avoidance (PDA) with Autism Learns, an online learning series: 16th & 17th July 2021: https://www.autismlearns.co.uk/understanding-pathological-demand-avoidance-pda/?utm_source=The%20National%20Autistic%20Society&utm_medium=email&utm_campaign=12471149_autismlearns%20-%20pda%2022.6.21&utm_content=PDA%20link&Keywords=PDA%20link&dm_i=YA3,7FAST,KW0HWZ,U5UK8,1

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