Disability Resources including Mental Capacity Act 2005 & Code
The information and links to third party resources on this page are provided for training and education purposes only. Advice from a suitably qualified and experienced lawyer should be sought in relation to individual cases.
Appropriate Language. These resources give some guidance of appropriate, inclusive language to use when talking about disability. Remember, however, that individuals will have personal preferences as to the language which should be used when talking with or about them.
Disability Matters is a training portal now hosted by Health Education England which provides training for professionals on all aspects of disability. The portal was created by a consortium of experts in disability led by the Royal College of Paediatrics and Child Health, including academics, voluntary organisations, disabled adults and children, parents and carers. Adam was one of the young people who contributed, he was also commissioned to write a rap for the launch of the portal. Dr Zoe Picton-Howell is the author of one of the modules.
Learning Disabilities matter
Learning Disability Matters for Families
Law Works a charity connects volunteer lawyers with individuals needing legal advice has kindly given the AdsFoundation to share recordings of their training events on our website. Although aimed at lawyers providing advice, the training sessions provide useful information about the for those working in health and social care.
This Law Works training session Disability discrimination: an overview is delivered by John Sprack (barrister and former Employment Tribunal Judge). It provides an overview of disability discrimination, including:
- what is distinct about disability discrimination, compared with the other protected characteristics protected by the Equality Act 2010?
- How is disability defined, and what constitutes ‘normal day to day activities’?
- What constitutes a ‘reasonable adjustment‘?
- What constitutes a claim for discrimination because of ‘something arising in consequence of a disability‘?
Thank you Law Works and John Sprack.
Statutes and Statutory Guidance
The Adults with Incapacity (Scotland) Act 2000 is an Act of the Scottish Parliament which applies in Scotland. It provides the legal framework for decision making for and with people aged 16 years and over who lack the capacity to make those decisions independently. The Code of practice for medical practitioners (see link below) provides important statutory guidance as to how the provisions of the Act should be put into practice in the context of healthcare.
Adults with Incapacity: Code of practice for medical practitioners
Equalities Act 2010 is UK legislation protecting the rights of nine groups of individuals most likely to face discrimination, including disabled people. The Act also creates a Public Sector Duty. This imposes a duty on public bodies to consider individuals protected by the Act when carrying out a public body’s day-to-day work, including planning and delivering services. Public bodies must consider both protected staff and protected members of the public using their services. Additionally, public bodies have a duty to work to:
- eliminate discrimination;
- advance equality of opportunity; and
- foster good relationships between different people when carrying out their duties.
Most organisations which have to follow the Public Sector Duty are listed in Schedule 19 of the Act, but private companies carrying out a public function will also be bound. For example, a private hospital providing NHS services.
Equalities Act 2020 UK Goverment Gudiance gives basic information as to how the Equalities Act should be implemented, including links to additional guidance for public bodies.
The Human Rights Act 1998 (HRA) incorporates the European Convention on Human Rights (ECHR) into domestic law in the UK, so into English and Scots law. In essence this means it makes it possible to bring actions for breaches of ECHR rights in the English, Welsh and Scots Courts.
The HRA applies to public authorities, as well as State funded authorities such as the NHS, this includes organisations, for example private hospitals or care homes, where a private organisation is providing publicly funded treatment and care.
Section 6 HRA makes it unlawful for a public authority to act in a way which is incompatible with the ECHR.
See under European and International Conventions below for more information about the
Mental Capacity Act 2005 Code of Practice
Mental Capacity Act 2005 Code of Practice (Easy Read Version)
The Mental Capacity Act 2005 (‘MCA’) is an Act of the UK Parliament which applies in England and Wales. It provides the legal framework for decision making for and with people aged 16 years and over who lack the capacity to make those decisions independently. The Code of Practice provides important statutory guidance as to how the provisions of the Act should be put into practice.
The Mental Capacity (Amendment) Act 2019 aims to reform the process under the MCA for authorising the deprivation of liberty for treatment and care for people who lack capacity to consent to treatment.
Additional Guidance on the Mental Capacity Act and its code are available from:
Court of Protection
Office of the Public Guardian
Department of Health and Social Care
Social Care Wales/Gofal Cymdeithasol Cymru
The Court of Protection Handbook is another useful resource. It is a website written by Alex Ruck Keene, Barrister; Kate Edwards, Associate Solicitor; Professor Anselm Eldergill, Court of Protection District Judge; and Sophie Miles, Barrister. It has a range of useful resources, including links to legislation, forms, practice directions and precedents.
You can find the AdsFoundation page linking to third party Deprivation of Liberty/Liberty Protection Safeguarding resources HERE
The Mental Health Act 1983 is an Act of the UK Parliament that applies in England and Wales. It provides the legal framework for the care and treatment of individuals with a mental impairment and the management of their property.
Mental Health Act 1983 : Code of Practice
Mental Health Act 1983: Code of Practice (Easy Read Version)
European & International Conventions
European Convention on Human Rights
The European Convention on Human Rights (ECHR) is a regional Human Rights Treaty signed by States which a members of the Council of Europe (CoE). The CoE is completely different organisation from the European Union (EU) (in the UK the ECHR is often, especially in the media wrongly described as an EU treaty). The CoE is a human rights and democracy organisation with 47 State members, including the all the members of the EU.
The UK was one of the 10 original signatories to the ECHR and took a prominent role in its drafting. The ECHR has been binding international law in the UK since it came into force on 3rd September 1953. Since 1965 UK citizens have been able to take cases of breaches of the their ECHR rights to the European Court of Human Rights (ECtHR) in Strasbourg (not to be confused with the EU European Court of Justice in Luxembourg).
The passing of the Human Rights Act 1998, made it possible for UK citizens to bring actions directly in UK courts. The ECtHR now acts as an appeals court once cases have been through the UK courts systems.
There is no express right to health or healthcare in the ECHR, but Article 8 (right to a privacy and a family life) and in extreme circumstances Article 3 (right not to be subjected to inhuman treatment or torture) have been interpreted to include a right to healthcare. The ECHR also contains in Article 2 a right to life and in Article 14 a right to be treated without discrimination. It is important to note, however, that Article 14 is a right not to be discriminated in relation to any of the rights in the ECHR, it is not a right not be discriminated against generally. In practice this means that a claimant first has to show their rights were breached under one of the other Articles of the Convention and then show that discrimination played a part in this. A healthcare example might be a disabled individual establishing their Article 8 right was breached in a healthcare context and then establishing that they suffered this breach because they were disabled.
United Nations Convention On The Rights Of Persons With Disabilities (UNCRPD)is an international human rights treaty which protects the rights and dignity of disabled people of all ages and ensures their equality under the law. The UNCRPD was drafted by disabled people, making it the first United Nations human rights convention drafted by individuals with direct experience of issues covered by the treaty. The UNCRPD promotes the human rights model of disability. It came into force on 3rd May 2008. Like all UN human rights treaties, the UNCRPD is overseen by an international Committee of experts. The government of every state that is a signatory to the UNCRPD must file a periodic report to the Committee (roughly every four years) reporting on how they are meeting their obligations under the UNCRPD. Civil society (for example, individuals with personal experience, voluntary and public sector bodies and academics) in each state also file an alternative report. Government reports tend to reflect what should be happening, whilst civil society reports, compiled by experts in that state, tend to reflect what is actually happening. In the UK separate government and civil society reports are complied for each of England, Scotland, Wales and Northern Ireland, but combined into two reports, one government and one civil service for filing with the UNCRPD committee. The United Kingdom ratified (formally became bound by it) the UNCRPD on 8th June 2009. On 7 August 2009 the United Kingdom also ratified both the Optional Protocol and the Inquiry Procedure to the UNCRPD. The first gives an individual the right to take a concern that their rights under the treaty have been breached directly to the Committee and the second gives the committee the right to investigate concerns within the UK. You can access all the UK and civil society reports to the Committee of the UNCRPD and the Committee’s findings called Concluding Observations, as well as all their investigation reports on the UK, by clicking on the link above and searching under United Kingdom on the top right.
The UK Equality and Human Rights Commission also publish this EASY READ version of the UNCRPD.
Professional Guidance
This link takes you to all National Institute for Health & Care Excellence (NICE) Learning Disability resources. This includes guidance, advice, NICE pathways and quality standards.
Welsh Government Publishes Learning Disability Educational Framework for Healthcare Staff in Wales (June 2021) The Framework has been developed as an outcome of the Welsh Government’s Improving Lives Programme. It aims to build knowledge, skills and competence across the workforce to reduce health inequalities for people with learning disabilities.
We also recommend that you watch Dr Karen Horridge’s AdsTalk21 ‘Equal Outcomes for ALL disabled children?’ Karen’s talk addressed the challenges disabled children and their families face in healthcare, including prejudicial attitudes and values from health professionals, but provided solutions to address these challenges. Watch ‘Equal Outcomes For All Disabled Children?’ here Further Resources from Karen’s talk:
Empowering data collection at the point of care:
https://adc.bmj.com/content/100/9/815
Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and Disabilities Complexity Scale
https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.13102
Prospective pilots of routine data capture by paediatricians in clinics and validation of the Disabilities Complexity Scale.
https://onlinelibrary.wiley.com/doi/10.1111/dmcn.13101
The Health, Functioning and Wellbeing Summary Traffic Light Communication Tool: a survey of families’ views
https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.13370
The traffic light tool:
https://hubble-live-assets.s3.amazonaws.com/bacd/redactor2_assets/files/94/HFWSummary.pdf
NCEPOD Each and Every Need report. 2018:
https://www.ncepod.org.uk/2018cn.html
Variation in health care for children and young people with a disability
https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.13899
Variation in health care for children and young people with cerebral palsies: a retrospective multicentre audit study:
https://onlinelibrary.wiley.com/doi/full/10.1111/dmcn.12740
Additional support for health, education and care for under 25 year olds
Health, education and social services are all devolved matters meaning that in England their are decided upon by the Westminster government and by the Scottish and Welsh governments in those parts of the United Kingdom.
England
Health and Education plans were introduced in England by Part 3 the Children and Families Act 2014. This created a duty for local authorities to conduct statutory education, health and care (EHC) needs assessments. These assessments determine whether individual children and young people in their area have special educational needs which require additional support or provision. When a local authority deems that a statutory EHC plan is needed, it must secure for the child or young person the special educational provision specified in the plan. The local authority also has a duty to maintain the plan.
The Council for Disabled Children provide excellent resources explaining Education and Health Care Plans, their implementation and advice for families.
The Westminster government also provide information on Education for families on Education and Health Care Plans.
Appealing an Education and Health Care Plan (or lack of plan)
An appeal can be made to the Special Educational Needs and Disability Tribunal if you disagree with a decision a local authority has made about a child or young person’s education, health and care needs or plan.
Appeals can be made if a local authority:
- refuses to conduct an EHC assessment or reassessment;
- refuses to create a EHC plan following an assessment or reassessment;
- refuses to change the parts of the plan (sections B, F & I) which relate to education;
- decide a EHC plan is no longer needed
This guidance from the Westminster government explains the appeal process, including who can appeal and how to appeal.
In September 2019 the Westminster government announced a review of Special Educational Needs support. The Westminster government published its response on 22nd July 2021.
Northern Ireland
Information on the system of assessment and support for children and young people in Northern Ireland can be found on the Northern Ireland Education Authority website.
Help and advice is also available from the Northern Ireland Special Educational Needs Advice Centre.
Scotland
In Scotland children and young people are described as having additional support needs, rather than special educational needs. The Education (Additional Support for Learning) (Scotland) Act 2004 as amended, sets out the duties placed on Scottish local authorities and children and young people and their families’ rights.
The Scottish Government has published statutory guidance (2017) which explains the 2004 Act and outlines how it should be implemented.
In Scotland appeals are made to the Additional Support Needs Tribunal.
Enquire provides advice and support relating to additional support needs in Scotland.
Wales
In Wales, as this useful guide from Contact (formally Contact A Family) explains, local authorities in Wales have a duty to assess children with special educational needs, provide a Statement (a legal document) of those needs and to meet those needs.
In Wales, parents, children and young people can appeal to the Special Educational Needs Tribunal for Wales established by the Education Act 1996. The Tribunal hears both appeals relating to special education needs provision brought against Welsh local authorities and claims of disability discrimination in Welsh schools.
Some Investigations:
UK Parliament, House of Lords Select Committee on the Equality Act 2010 & Disability. The Equality Act 2010: the impact on disabled people (24th March, 2016)
The House of Lords Select Committee issued a ‘call for evidence’ on 25th June 2015. Their investigation considered in particular the adequacy, implementation and enforcement of the Equality Act from the perspective of disabled people.
Five key findings made by the select committee were that:
- planning, buildings and services were still an afterthought for disabled people.
- Government, the NHS, local authorities, schools, courts & businesses are reactive to the needs of disabled people rather than proactive.
- Disabled people are not listened to, doing so would help meet their needs and organisations do not communicate to disabled people their rights.
- Rights are unenforceable, so not worth having.
- It is the government’s duty to ensure the rights of disabled people are fulfilled and their needs met, the government is failing in this duty.
House of Lords, Select Committee Report, Equality Act 2010 & Disability
NHS England Learning Disability Mortality (death) Review Programme (LeDer) The LeDer programme was set up in 2015 to reduce premature mortality and health inequalities and to improve health and social care for people with a learning disability. Deaths reviewed by LeDer show that, compared with the general population, the median age of death is 23 years younger for men and 27 years younger for women, the review is interested in why this is to help prevent further deaths.
LeDer 2020-2021 Annual Report and Action from Learning Programme EASY READ VERSION:
LeDer2021 Learning from Lives and Deaths – People with a Learning Disability and Autistic People Report a death of a person with a learning disability using this LINK ‘Anyone can tell us about the death of a person with a learning disability. This includes family doctors (GPs), health and social care staff, family members, friends and carers.’ GOV.UK
Research & analysis COVID-19: deaths on people with learning disabilities (12th November 2020) A government review of the available data on deaths of people identified as having learning disabilities in England during the COVID-19 pandemic. The National Confidential Enquiry into Patient Outcomes and Death (NCEPOD)
Chronic Neurodisability – Each and Every Need (2018) NCEPOD reviews clinical pratices and identified potentially remediable factors. Mencap,
Death By Indifference: 74 Deaths and counting; progress report 5 years on (2012) Mencap,
Death By Indifference (2007): Investigation into institutional discrimination within the NHS, leading to avoidable deaths of individuals with learning disabilities. Mencap,
Treat Me Right (2004): Case studies of institutional discrimination of individuals with learning disabilities, with recommendations for change.
House of Commons Library Research Briefing: Support for people with a learning disability 8th June 2021
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