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Learning disability services
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| REACH Standards – Paradigm, Sally Warren, Jo Giles, 2019 (voluntary standards developed to hold to account and enable conversations about supported living) | (Linked to CQC KLOEs) I choose who I live with I choose where I live I have my own home (with a tenancy or ownership) I choose who supports me and how I am supported I choose my friends and relationships I get help to make changes in my life I choose how to be healthy and safe I choose how I am part of the community I have the same rights and responsibilities as other citizens
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CQC. Right Support Right Care Right Culture. How CQC Regulates Providers Supporting Autistic People and People with a Learning Disability. October 2020
Housing with Care: Guidance on Regulated Activities for Providers of Supported Living and Extra Care Housing. October 2015 (regulatory guidance for providers) | Right support: Model of care setting maximises people’s choice, control and independence
Right care: Care is person-centred and promotes people’s dignity, privacy and human rights
Right culture: Ethos, values, attitudes and behaviours of leaders and care staff ensure people using services lead confident, inclusive and empowered lives
KLOEs: Safe, effective, caring, responsive, well led
For example: Care is client-centred and integrated |
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| NHSE, with Local Government Association, Association of Directors of Adult Social Services (ADASS). Building the Right Support: A National Plan to Develop Community Services and Close Inpatient Facilities for People with a Learning Disability and/or Autism who Display Behaviour that Challenges Others, Including Those with a Mental Health Condition. October 2015, p. 25 | Describes and links to a national service model to be delivered by March 2019, aiming to reduce institutional care in campuses and long stay hospitals and the overuse of in-patient treatment, reducing provision by 35–50%, replaced with community commissioned provision. Implementation through 49 TCPs. The National Service model is summarised below: |
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People should be supported to have a good and meaningful everyday life – activities education, employment, social and sports/leisure, relationships Care and support should be person-centred, planned, proactive and co-ordinated – with early intervention and preventative support, personalised care and support plans People should have choice and control over how their health and care needs are met – with information, independent advocacy and personal budgets People with a learning disability and/or autism should be supported to live in the community with support from and support and training for their families/carers as well as paid support and care staff, supporting people who display behaviour that challenges others People should have a choice about where and with whom they live – with a choice of housing including small-scale supported living People should get good care and support from mainstream NHS services, using NICE guidelines and quality standards – with Annual Health Checks Health Action Plans, Hospital Passports, etc. People with a learning disability and/or autism should be able to access via integrated specialist 24/7 multidisciplinary health and social care teams When necessary, people should be able to get support to stay out of trouble (including the criminal justice system) When necessary, when their health needs cannot be met in the community, they should be able to access high-quality assessment and treatment in a hospital setting
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Building the ‘right support’ and the accompanying NHSE ‘service model’ require: ‘I have a good and meaningful everyday life’ ‘My care and support is person-centred, planned, proactive and co-ordinated’ ‘I have choice and control over how my health and care needs are met’ ‘My family, and paid support and care staff get the help they need to support me to live in the community’
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‘I have a choice about where I live and who I live with’ ‘I get good care and support from mainstream health services’ ‘I can access specialist health and social care support in the community’ ‘If I need it, I get support to stay out of trouble’ ‘If I am admitted for assessment and treatment in a hospital setting because my health needs can’t be met in the community, it is high quality and I don’t stay there longer than I need to’
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| McGill P, Bradshaw J, Smyth G, Hurman M, and Roy A. Capable Environments. King’s College London; 2014 (recommendations to commissioners based in research) | A theoretically driven approach recognising that social and environmental ‘motivating operations’ can provoke or reduce challenging behaviour, includes:
Positive social interactions, support for communication, support for meaningful activity, provision of predictable and consistent environments, opportunities for choice, encouragement of greater independence, support to establish and maintain relationships, personal care and health support, mindful (empathic) and skilled family/carers and paid support/care staff, effective management and organisational support
Standards: People at risk of displaying challenging behaviour should be: |
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liked and frequently interacted with in meaningful ways supported in rich communication environments where their communication skills are consistently recognised and responded to and where communication is considered in all areas of the person’s life supported to participate in meaningful activity, using skilled support, which provides enough support to ensure success supported consistently and be given support to understand and predict events supported to maintain relationships with family and friends offered experiences which lead to meaningful choices which are clearly communicated supported to try new experiences, develop skills and increase independence supported in dignified ways to care for and look after themselves and their health supported in acceptable physical environments supported by skilled and mindful carers who have the skills to lead all aspects of capable practice receiving support that is delivered and arranged within a broader understanding of challenging behaviour that recognises (among other things) the need to ensure safety and quality of care for both individuals and carers
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| Thornely J, Lawley J. NHSE Reflective Framework- Confirm and Challenge Toolkit. NHSE Northwest Resettlement Hub; 2017 (an advisory reflective tool for individual and organisational uses) | Putting people first, staff and culture, systems and processes and partnerships along with the five ‘golden threads’ of transforming care should be considered using the six safeguarding adult principles along with each of the 6 Cs underpinning values of ‘Leading Change; Adding Value’; (National Nursing and Care Strategy 2016)
For example: Putting people first and Empowerment-Care, compassion, commitment and courage – Is there evidence that the organisation promotes choice, listens to the individual and their family, advocate and other members of the individual’s circle of support? Compassion, communication and competence – Is there evidence that the organisation supports staff to make decisions with the individual and their family? Courage, care and commitment – Is there evidence of positive and collective risk taking? Compassion and competence – staff are encouraged to be creative and innovative, training and supervision in place and robust supporting achievement of person-centred goals?
Approximately 63 ‘Wicked questions’ support the above Confirm and Challenge tool. Examples: |
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Is there a detailed and up-to-date person-centred plan which considers the person’s Physical, Intellectual, Emotional and Social (PIES) needs with a circle of support identified? When you read the person’s plan can you get a sense of the person, their likes and dislikes, interests, personality, things that are important to and important for the person? How is the person supported to have a ‘bad hair’ day? We all have them but often if the person has challenging needs just having an ‘off day’, wanting to stay in bed or have toast instead of cereal becomes medicalised/an incident and contributes to their ‘reputation’
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End-of-life care (EOLC)
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| NHSE. Delivering High Quality EOLC for People who have a Learning Disability. 2017 (guide for health and social care commissioners, providers and those delivering care) | NHSE and the Palliative Care for People with Learning Disabilities Network (PCPLD) developed a resource for commissions, providers and those delivering services linked to the NHSE 6 Ambitions
Six ambitions for local health and social care providers should use to build the accessible, responsive, effective and personal care needed at the EOL: |
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Each person is seen as an individual Each person gets fair access to care Maximising comfort and well-being Care is co-ordinated All staff are prepared to care Each community is prepared to help
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| NHS Improving Quality. The Route to Success in EOLC – Achieving Quality for People with Learning Disabilities. 2011 (guide for individuals and those delivering care) | This guide was developed by the National End of Life Care Programme (NEoLCP) and GOLD (Growing Older with Learning Disabilities) programme, which is a facilitated group of older people with learning disabilities: It is aimed at families, and those caring infrequently for people with learning disabilities, and takes them through 6 steps in the process. It is underpinned by four principles: |
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Care is client-centred and integrated Treat individuals with dignity and respect Identify and respect people’s preferences Provide care after death
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| College of Social Work, NHS Improving Quality with College of Social Work. The Route to Success in EOLC – Achieving Quality for Social Work. 2015 (guide for social workers and managers) | A guide for practitioners and their managers to identify issues, tips, reflective questions and case studies. It links to social work core values around rights-based approaches and the individual in context. It uses the six-step approach in related ‘routes to success’ guides |
