Changing values
An understanding of the nature of intellectual disability is essential for health care professionals, who are required to support equal access to their services for all disabled people.
Down Syndrome Act 2022
The Down Syndrome Act will require the UK Government to publish guidance on the specific needs of people with Down syndrome and how to meet them. The relevant public authorities providing health and social care services must then have due regard to this in carrying out their functions under existing legislation such as the Care Act 2014 and the Equality Act 2010. It is hoped that this sets a precedent to ultimately benefit the care and support for everyone with a learning disability, not just those with Down syndrome.
The timing of this Act complements the Health and Care Act, which specifies that there will be a named lead for learning disabilities and autism within each Integrated Care Board (ICB). They will ultimately be accountable for the implementation of the guidance put before Parliament. It is vital that ICBs have up-to-date guidance and are held accountable for the integrated approach to health and care that these individuals need and deserve, to reduce the already huge health inequalities that have only grown through the pandemic. It also aligns with the inclusion of mandatory training on learning disabilities and autism for all health and social care staff as part of the Health and Care Act; building the right support action plan and proposals within the Reform of the Mental Health Act Bill seeks to remove learning disabilities and autism as mental disorders for which people can be detained involuntarily beyond a 28-day period of assessment. The Down Syndrome Act is another measure to improve community-based care and promote least restrictive practice.
Down Syndrome Act 2022 https://bills.parliament.uk/bills/2899
https://www.downs-syndrome.org.uk/news/news-research/dsa-news/down-syndrome-act/
Mandatory Training in LD and Autism
The Health and Care Act 2022 includes the provisions for mandatory training on learning disabilities and autism for all health and social care staff to improve the health inequalities that many people with learning disabilities and autism currently face. This includes the creation of a code of practice on how this training will be created and delivered and ensures that coproduction and codelivery is embedded from the start. This builds on the pilot of the Oliver McGowan Mandatory Training that has already seen more than 8,000 staff take part.
Health and Care Act 2022 https://bills.parliament.uk/bills/3022
https://www.hee.nhs.uk/our-work/learning-disability/oliver-mcgowan-mandatory-training-learning-disability-autism
https://www.olivermcgowan.org/
Articles
History of Down's Syndrome
Down's Syndrome is a genetic condition which is the commonest identifiable cause of intellectual disability, accounting for almost one third of cases. It occurs equally in all races with an overall incidence rate of approximately 1 in 800 births.
Action for Health - How Is It Going?
The overall objective of Valuing People was to enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a consistently high standard and, with additional support where necessary.
Assessment in Primary Care
This article describes the expected health needs of people with intellectual disabilities in the community and how best to identify and address these needs.
My Role As A Supporter
The best bits are when a person tells me: "I've just seen Jackie and she's so much stronger than the person I met eight years ago - is that because you're supporting her?"
Self Advocacy
Why it is important for People with Intellectual Disabilities to have a voice of their own
Top Ten Tips For Effective Consultation
It is important to know who has intellectual disabilities in Primary Care. There are ways of identifying someone without embarrassing them. These tips may be helpful from the moment the person with intellectual disabilities contacts the GP. People with intellectual disabilities need to have sufficient time to allow them to speak for themselves.
The Wellness Book
The author raises concerns about what will happen to her daughter with Down's syndrome when her mother is no longer around to support her. She suggests one helpful solution, a 'Wellness Book'. The article is followed by two commentaries from different perspectives.
Working With The Baked Bean Theatre Company
Acting gives us all freedom of expression. We've got quite a few actors who can't talk, and acting really gives them a chance to express how they feel in mime.
Setting up the Baked Bean Theatre Company
Commentary on Working with the Baked Bean Theatre Company
Shine a Light
A medical student in New Zealand reflects on a family placement, showing how his encounters with a three-year-old boy changed his understanding of the meaning of disability in someone’s life.
An Exception to the Rule? Practising Ethics in Practice
This article considers an ethical dilemma confronted by a junior doctor on a specialist learning disabilities team, and discusses the challenges and pressures implicit in this, together with the absolute necessity not to compromise ethical values.
Equality and Equity of Access to Healthcare for People with Intellectual Disabilities
This article highlights problems encountered by people with intellectual disabilities when they seek to access healthcare. Four key domains for change (practice, education, policy and research) are explored and some practical strategies for achieving change are identified.
Including people with intellectual disabilities in mainstream health services : Government policy in England since 2001
People with intellectual disabilities experience health inequalities that health services have a duty to address. However, despite numerous reports on poor healthcare for people with learning disabilities, and some attempt to address the issues raised within policy, many health services are still failing people with intellectual disabilities. This article, updated in 2017, describes the policy response in England to the numerous reports on poor healthcare for people with intellectual disabilities since Valuing People 2001.
Do not attempt resuscitation, end-of-life decision-making and associated directives, and their implications for people with intellectual disabilities
This article addresses how legal provisions for people choosing where and how they die, such as advance directives and lasting powers of attorney for health and welfare, affect those with intellectual disabilities.
The Landmark 19th of March 2014 Supreme Court judgement: The judgement and how do we see Deprivation of Liberty now?
An overview of the 19th of March 2014 Supreme Court judgement and the effects that this judgement is continuing to have on the care of people subject to ‘Deprivation of Liberty Safeguards’.
Being Alert: Changing culture, shaping care – getting care right for people with intellectual disabilities
Accessing health services when you need them is difficult for everyone but particularly for people with an intellectual disability and their families and supporters.
I Have Down's Syndrome - But Don't Feel Sorry For Me
How unusual is Anya? "The fact that Anya has achieved such normality in her life against all the odds is an enormous tribute to her and her family."
Diagnostic Overshadowing: See Beyond the Diagnosis
This article considers ways of ensuring key health issues are not overlooked in people with intellectual disabilities.