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“LEARN”ing what is important to children and young people with intellectual disabilities when they are in hospital
- Authors:
- OULTON K., SELL D., GIBSON F.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(5), 2018, pp.792-803.
- Publisher:
- Wiley
Background: The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital‐related needs and experiences of CYP with intellectual disabilities. Method: An ethnographic study of a neurosciences ward and outpatient department was conducted within a paediatric tertiary hospital setting. Results: Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital: (i) little things make the biggest difference, (ii) eliminate unnecessary waiting, (iii) avoid boredom, (iv) routine and home comforts are key and (v) never assume. Conclusions: It is imperative that the present authors continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate. (Edited publisher abstract)
New directions for independent living: inspection of independent living arrangements for younger disabled people
- Author:
- FRUIN David
- Publisher:
- Great Britain. Department of Health. Social Services Inspectorate
- Publication year:
- 2000
- Pagination:
- 76p.
- Place of publication:
- London
Report of a national programme of inspection of local authority arrangements for supporting independent living for younger disabled people. Ten councils were chosen to be broadly representative of all English councils. The inspections focused on: how independence for disabled people is being promoted; direct payments and other support; assessment and care management processes; principles; information; equality of opportunity; and management arrangements.
Learning disability: behaviour that challenges: (QS101)
- Author:
- NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE
- Publisher:
- National Institute for Health and Care Excellence
- Publication year:
- 2019
- Pagination:
- 57
- Place of publication:
- London
Quality standard covering care and support and services for children, young people and adults with a learning disability (or a learning disability and autism) and behaviour that challenges, and their families and carers. The standard includes 12 quality statements which describe what high quality care should look like. They include quality statements on: a lead commissioner to oversee strategic commissioning of services for all people with a learning disability; provision of annual health checks; initial assessment of behaviour that challenges; the provision of a named lead practitioner; involving families and carers; parent-training programmes; personalised daily activities; services in the community; housing; review of restrictive intervention; and use and review of medication. The standard is expected to contribute to improvements in the following outcomes: promotion of independence, choice and control over daily life; experience of using social care and healthcare services; use of restrictive practices; and quality of life for people with a learning disability and behaviour that challenges, and their carers. Originally published in 2015, this quality standard was updated in July 2019 to add four new statements, update one statement and amend one statement. (Edited publisher abstract)
Care, Education and Treatment Reviews for children and young people: code and toolkit. A guide for commissioners, panel members and people who provide support
- Author:
- NHS ENGLAND
- Publisher:
- NHS England
- Publication year:
- 2017
- Pagination:
- 59
- Place of publication:
- Leeds
This Code and Toolkit provides framework to ensure that Care, Education and Treatment Reviews (CETRs) for children and young people who either have been, or may be about to be admitted to a specialist mental health or learning disability hospital are delivered to a consistently high standard across England. It also provides commissioners with tools to help them carry out CETRs. It outlines the main principles for delivering CETRs, which include the principles of human rights, child -centeredness and co-production; the standards for each principle; and the criteria used to evaluate the standards in practice. It also outlines the roles of CETR experts by experience and clinical experts; provides a checklist for commissioners and providers to use; and a set of hospital discharge steps and standards to help commissioners navigate through the discharge process. (Edited publisher abstract)
Service framework for learning disability
- Author:
- NORTHERN IRELAND. Department of Health, Social Services and Public Safety
- Publisher:
- Northern Ireland. Department of Health, Social Services and Public Safety
- Publication year:
- 2015
- Pagination:
- 157
- Place of publication:
- Belfast
This Service framework for learning disabilities is one of a set of Service Frameworks which sets out standards for health and social care to be used by service users and carers, to help them understand the standard of care they can expect to receive in Northern Ireland. The Service Framework for Learning Disability aims to improve the health and wellbeing of people with a learning disability and their carers and families by promoting social inclusion, reducing inequalities in health and social wellbeing and improving the quality of health and social care services. The Framework sets standards in relation to: Safeguarding and Communication and Involvement in the Planning and Delivery of Services; Children and Young People; Entering Adulthood; Inclusion in Community Life; Meeting General Physical and Mental Health Needs; Meeting Complex Physical and Mental Health Needs; At Home in The Community; Ageing Well; and Palliative and End of Life Care. Each standard is accompanied by a statement on what the standard is intended to achieve. It also sets out the evidence base and rationale for the development of the standard and the performance indicators that will be used to measure that the standard during the three year period 2013 - 2016. The Framework has been developed with the involvement of people from all aspects of health and social care, including patients, users of services and their carers. (Edited publisher abstract)