Professionals
Learning Disability and Autism
There are 1.5 million people with a learning disability in the UK with 351,000 being children aged 0 to 17.
A learning disability occurs when the brain is still developing (before, during or soon after birth). It is a lifelong condition that starts before adulthood and affects somebody across all areas of their life. It characterised by a:
- significantly reduced ability to understand new or complex information and to learn new skills
- reduced ability to cope independently
There are different types of learning disability, which can be mild, moderate or severe and can have a profound lasting effect on development. The level of support someone needs depends on the individual.
Someone with a mild learning disability may only need support with things like getting a job. However, someone with a severe or profound learning disability may need full-time care and support with every aspect of their life. They may also have a physical impairment.
Specific learning difficulties, which only affect a subset of skills, such as dyslexia, are not the same as a learning disability. It is important to note that everybody with a learning disability is different and has their own unique strengths, difficulties and experiences. It is important to see the person first, regardless of their diagnosis. People do not fit into “boxes”.
While some people have said that labels and diagnoses were helpful to gain access to services and get help, others did not feel the same way. “Labels” follow people for life and change how they feel about themselves. Assessments should be used to help people to be supported rather than list the things that the person cannot do.
Autism is not a learning disability but it can affect learning and dealing with daily life. 1 in 100 people are autistic and there are around 700,000 autistic adults and children in the UK. It is a lifelong disability which affects how people communicate and interact with the world. Approximately 1% of the population will have a diagnosis of autism. In Havering that is over 2,600 adults and children.
Three times as many males as females are diagnosed with autism. There are multiple theories about this, including a range of biological and environmental factors which may mean men and boys have a higher prevalence of autism. However, it is also felt that women and girls may be better at masking or camouflaging their difficulties and that autistic traits in girls and women can look quite different. This may mean that autism is under-reported and therefore under-diagnosed in females.
There is some evidence that rates of autism are higher in gender-diverse people, but the reasons why are unknown
Autism can occur across the full range of intellectual ability which means that some people with autism may also have learning disabilities.
Autism is often referred to as spectrum. Every autistic person has a unique combination of traits and sensitivities. Instead of affecting cognitive behaviour across the board, autism specifically affects social and communication skills, thinking flexibly and sensory perceptions. It can also occur across the full range of intellectual ability and may impact learning, pace of response and behaviour significantly.
As with learning disabilities, executive functions of planning, adaptable thinking etc. are likely to be reduced. An autistic person may appear to have reduced intellectual abilities but there are many people of average to extremely high intellectual capacity. An autistic person with high intellectual functioning may run their own company, but struggle to do their washing independently or remember to shower regularly. Likewise, an autistic person with a learning disability may receive 24/7 support due their needs, but they could have a particular interest in washing machines and be able to do laundry independently and know lots about different types of machines
Autistic people are sometimes described as having a “spiky profile” of skills, meaning that they can be very skilled in one area and need a lot of support in another. Each day could be different and the level of support someone needs may change as a result. Because of the “spiky profile” we should not underestimate people’s skills and abilities, or conversely, expect them to perform well in all areas. It is important to ask the person how they would like to be supported each time.
Some autistic people may require 24 hour care and support in many areas of their daily lives whilst others have no formal support needs. Others will fall somewhere in between. This does not mean that they are any less autistic.
People may experience varying challenges across different aspects of their lives, and therefore need different types or amounts of support in different areas. As mentioned previously, many call this the “spiky profile” of autism.
We cannot assume that someone’s intellectual ability or use of language reflects their needs. Like everyone else, every autistic person is a unique individual with their own strengths and areas of difficulty.
Social communication can be challenging for people because of:
- taking things literally and not understanding abstract concepts
- needing extra time to process information or answer questions
- repeating what others say to them (this is called echolalia)
During social interaction people may:
- appear to be insensitive
- seek out time alone when overloaded by other people
- not seek comfort from other people
- appear to behave “strangely” or in a way thought to be socially inappropriate
- find it hard to form friendships
GP Registration and Health Plans
All GP’s hold a register of their patients who have a learning disability. Everyone over the age of 14 should be invited for an annual health check and receive a health action plan every year. It is therefore very important to encourage people to sign up to the learning disability register. This will ensure that they are offered flu vaccinations, as well as good health screening for checks such as breast or prostate cancer.
Around 30% of autistic adults have a comorbid learning disability, physical, and mental health conditions. While those with a comorbid learning disability are more susceptible to physical health issues, those without a learning disability are at higher risk of mental health problems.
Autistic adults without a learning disability die 12 years earlier when compared to the general population so it is important that those working in health and social care are aware of these hidden vulnerabilities.
Medication
For a long time people with learning disabilities and autistic people with or without learning disabilities have been given too much or inappropriate medication and their medicine has not been reviewed as often as it could have been. Stopping Over-Medication of People with learning disabilities, autism or both (known as STOMP) and Supporting Appropriate Medication in Paediatrics (known as STAMP) continue to be key priorities.
Please take a look at the Oliver McGowan learning video here
Constipation
Constipation can be a life-threatening issue for people with a learning disability who are at heightened risk of complications if it is left untreated. 23 per cent of people with a learning disability who died in 2019 had constipation as a long-term condition. The NHS has produced a range of resources for people with a learning disability to highlight the seriousness of the condition
The Community Learning Disability Team (CLDT) is a joint health and social services team and offers a service to adults aged 18 and over who may need help because of a learning disability.
This may include people who also have any of the following additional needs:
- Physical and/or sensory disabilities
- Speech and language difficulties
- Difficulties in social functioning
- Concurrent mental health problems
- Behaviours of concern
- Epilepsy
The CLDT offers adults with a learning disability and their carers advice, information, and support. The Team is also responsible for: assessment, care planning, specialist health care, and purchasing of appropriate care packages. Find out more here:
In March 2023, the Havering Autism All Age Strategy 2023-25 was published. It can be found here:
The Easy Read version can be accessed here
Meeting the needs of autistic adults in Mental Health
Guidance for ICB, health organisations and wider system partners can be found here
Learning from lives and deaths” – People with a Learning Disability and Autistic People (LeDeR)
In 2021 NHS England and NHS Improvement published “Learning from lives and deaths” – People with a Learning Disability and Autistic People.
This is the new LeDeR policy and the name has changed to reflect the inclusion of autism. From now on, all deaths of autistic people will also be reviewed.
The reviews confirm that people with learning disabilities die younger than those without. Six out of ten people with a learning disability die before they reach the age of 65 compared to one in ten in the general population without.
Men with a learning disability die on average 22 years younger than men in the general population and women die with a learning disability die 26 years younger.
The 2022 Kings College london LeDeR Annual Report can be found here
The Full Report in an easy video can be accessed here
The Local LeDeR 2022/23 annual Report for NEL can be found below
NELICB_LeDeR-Annual-Report-2022-23_-20230815_v03-final
This short film, THINK COULD was published in May 2023 and helps us consider the needs of those with Learning Disabilities in the Criminal Justice System
The animation, which was first screened on 18th May during a virtual event hosted by QNIS (Queens Nursing Institute Scotland), serves as a vital resource for professionals who work within the justice system. Its primary objective is to raise awareness about the diverse needs of individuals with learning disabilities, emphasising the fact that they may mask their condition, have reduced understanding of their actions, or have additional support needs
For more information about ‘Think COULD’ or any of the nurses in the Learning Disability Queen’s Nurse cohort please contact QNIS Digital Engagement Manager, Tasha Prigmore at comms@qnis.org.uk
A new Blood Test Clinic has been set up for people with Learning Disabilities in Havering. For more information email Lduty@havering.gov.uk
or telephone 0300 300 1531
London Ambulance Support
The London Ambulance Service have co-produced 3 new resources to support people with a learning disability or autistic people when using the ambulance service. This can be required by anyone when least expected however causing significant anxiety and distress.
These resources are designed to help to know what to expect when an ambulance comes to see you including assessments we may ask to complete, the inside of an ambulance and demystifying common concerns.
Using content requested by people with lived experience, we have made an easy read document, social story and a video.
These can be used proactively and in the event of needing an ambulance by people with a learning disability, autistic people and those that support them. By increasing understanding, reducing anxiety and supporting engagement with the service, the resources hope to reduce barriers to accessing the service and promote people getting the help they need with their health in a timely way.
Social story: https://online.fliphtml5.com/jbhej/fihy/#p=1
Video without subtitles : https://www.youtube.com/watch?v=PiIIFlBWZ3k
Video with subtitles: https://www.youtube.com/watch?v=rMfU4XUZxB0
Video with subtitles: Tricky Friends
Barking, Havering and Redbridge University Trust (BHRUT) Passports
BHRUT can support patients with Learning Disabilities and/or Autism and their care networks, before, during and after their hospital visit or appointment.
To help this process run smoothly, please visit https://www.bhrhospitals.nhs.uk/help-for-people-with-learning-disabilities/ to download a passport which when completed will provide information about the patient and their healthcare and treatment.
There are a choice of three different passports: children with a learning disability; adults with a learning disability; and autistic people.
The passport should be taken with patients to each hospital visit or stay. This will ensure that the Learning Disability and Autism Team at Queens Hospital in Romford and King Georges Hospital in Goodmayes are aware of any additional needs so that equitable care can be provided and reasonable adjustments made.
Should the patient require additional support during the hospital visit, the Learning Disability and Autism Team should be contacted on 0208 970 5710 or email Bhrut.learningdisabilitiesteam@nhs.net
Arrangements can then be made for a member of the team to support the patient on arrival.
The team work from 9am-5pm Monday to Friday
The Learning Disability Partnership Board is chaired by the Director of Living Well, Patrick Odling-Smee. Find out more here xxxxx
The Carers Hub, which has information about Carers’ Assessments can be accessed here:
Better Living
Havering Council encourages you to connect and use your personal (friends and family) and local support (eg community group, faith centre) networks to get advice and support.
To support that, our Adult Social Care service works closely with a number of organisations and voluntary agencies for you to contact and get the information, advice or support you need.
This is called Better Living.
There is lots of advice via the links below and you can use our ‘How can we help?’ tool below to be guided to the right place if you are not sure exactly what you need to find out: https://www.havering.gov.uk/info/20015/adult_social_care
Parents in Partnership SEND (PIPS) Information, Advice & Support Service provides impartial information, advice and support regarding educational matters, to parents/carers, children and young people aged 0 to 25 years with special educational needs (SEN), medical conditions or disabilities. Find out more here:
The Logacl Government Association has commissioned a guide on “Preparing for adulthood: Young people with a learning disability and autistic young people”.
Learn more here:Preparing for adulthood: Young people with a learning disability and autistic young people
Right Care, Right Person is an approach designed to ensure that people of all ages, who have health and/or social care needs, are responded to by the right person, with the right skills, training, and experience to best meet their needs. Though the approach can be applied more broadly than cases relating to mental health.
At the centre of the RCRP approach is a threshold to assist police in making decisions about when it is appropriate for them to respond to incidents, including those which relate to people with mental health needs. The threshold for a police response to a mental health-related incident is:
– to investigate a crime that has occurred or is occurring; or
– to protect people, when there is a real and immediate risk to the life of a person, or of a person being subject to or at risk of serious harm.
FLOW CHART Response to patients who are AWOL or walk out from a MH inpatient unit v2.0
In the UK, the term ‘deaf’ is used to refer to all levels of deafness. People who describe themselves as deaf are likely to be profoundly deaf.
The ‘uppercase D’ Deaf is used to describe people who identify as culturally Deaf and are actively engaged with the Deaf community. Deaf with a capital D indicates a cultural identity for people with hearing loss who share a common culture and who usually have a shared sign language. People who identify as Deaf have Sign Language as a primary language.
Within discourses and conversations about intersectionality it is important we keep the Deaf community in mind and raise awareness and discuss issues impacting marginalised communities.
Sadly, the lived experiences of Deaf and deaf blind survivors, and survivors with disabilities going through violence and abuse are often ignored. It is important to understand the intersectional inequalities.
Women who are Deaf and /or have disabilities are 2 to 4 times more likely to experience domestic violence than hearing or able bodied women. Around 22 Deaf women are at risk of abuse everyday. In spite of this, Deaf survivors face significant barriers accessing support.
Deaf people commonly experience barriers accessing healthcare, affecting physical and mental health support. Around 90-95% of Deaf people are born into hearing families, and are often isolated due to communication deprivation, which has been shown to impact mental and emotional health in later life. Attitudes based in audism (hearing supremacy) are common throughout healthcare and support services.
Written English is not accessible to all people with Sign Language as a primary language. The lack of accessible Sign Language information makes it more difficult for Deaf women to understand and recognise abuse, and to access support. This leads to higher risks of Deaf women being subjected to domestic abuse, including financial abuse, forced marriage and Honour Based Violence. LGBTQIA Deaf people can face even more barriers to support.
There are very few resources and information available about the impact of deafness on Black and minoritised women. This gap shows the need to highlight how Black, Deaf women continue to experience multiple oppressions due to their race, Deafness, and sexist practices that prevail amid systemic barriers, and male dominated culture.
There are powerful arguments for the need for specialist by and for services for the Deaf community which can be accessed equally throughout the UK providing Sign Language based, culturally informed support. Deaf survivors include many extremely vulnerable and complex cases, especially from non-British born and from Black and minoritized communities. There are extra barriers and vulnerabilities for Deaf people from ethnic communities coming to UK especially if they have minimal language skills and no education.
Deaf women are vulnerable to being enticed abroad to marry Deaf or hearing partners who could use this as an opportunity to get British citizenship or permanent visas. It could happen that abuse escalates once the abusive partner is settled.
At times, Deaf women seeking support due to abuse could feel reluctant due to fear of their safety being compromised as their perpetrators could locate or find them through mutual friends as they are small community. It is also common that Deaf perpetrators use their Deafness as an excuse to avoid prosecution, at times court cases often dropped due to no interpreters available.
We all have to ensure that we listen to Deaf women’s needs and make the services inclusive. We all need to do more for Deaf community to feel included and provide accessible services.
Marie Vickers, Domestic Abuse Service Manager, SignHealth has highlighted it very powerfully “If the pandemic taught us anything it would be the importance of Deaf Awareness and making services accessible. Deaf people have been more isolated due to pandemic because many services became inaccessible due to contact being dependent on phone calls and the use of facemasks prohibiting lip- reading. Deaf people may be trapped in abusive relationship as they have no way of seeking support. This is unacceptable and we hope by working together we can improve this situation and save lives.”
Forms of abuse common to Deaf individuals include:
- signing very large and wild
- signing close to your face
- making fun of your speech
- emotional, psychological, physical or economic abuse
- a combination of any of the above.
Abusers could intentionally misinterpret in social settings. Or, if police are called to the home, abusers may manipulate the interpreting process. They might also damage or destroy their partners’ communications equipment or assistive devices, refuse to use sign language, or abuse hearing dogs.
Deaf people are also vulnerable to specific kinds of physical abuse. Abusive partners may attack their victim’s ears to hurt them. Abusers might hurt their hands to prevent signing, or their eyes to restrict their sight and isolate them even more. They might even excuse violence as being “culturally appropriate” in the Deaf community. This could look like throwing an object at someone and saying it was to get the victim’s attention. They may use intimidating body language and explain it away as normal British Sign Language(BSL).
Deaf survivors of Domestic Abuse face unique circumstances that can make it harder to access services or leave an abusive situation. Dynamics within Deaf, Deaf Blind, or hard of hearing communities can make it difficult to retain confidentiality, and abusive partners may have increased opportunities to limit access to support or information.
Havering Council can offer support here
The RNID are the national charity supporting the 12 million people in the UK who are deaf, have hearing loss or tinnitus.
The NSPCC has advice on safeguarding deaf children and young people here
Empowering Deaf Society (EDS) is a registered charity, dedicated to improving the quality of life for deaf people. Visit their website here
Children and vulnerable adults can be harmed online. There are risks of radicalisation, exploitation, bullying, sexual abuse, and financial and material abuse.
People with complex needs and disabilities face a higher risk of online abuse than the wider population. There is an increased vulnerability to all forms of online abuse including cyber-bullying, sexual abuse and exploitation, other forms of criminal exploitation, radicalisation, financial abuse and online scams.
The online activity of children, young people and vulnerable adults should always be considered as part of any assessment. Online activity can be just as influential on safety and wellbeing as face to face interactions. Ask questions and be curious about people’s online lives. Explicitly explore what devices people have access to and what they do on them. Explore with parents and carers what safety mechanisms are in place – this matters just as much in residential placements as it does in the family home. Explore how much children, young people and vulnerable adults understand about the issues they may face online. The more isolated someone is, the more they may rely on online contact for social and emotional support. This may leave them more vulnerable to abuse and exploitation. If you notice a change in behaviour or signs of distress, remember this might be related to online experiences. Ask!
Radicalisation
Radicalisation is a process by which individuals, often young people, move from supporting moderate mainstream views to supporting extreme ideological views.
Radicalisers use techniques to groom people and draw them in and might even seem or look harmless to start with. Be vigilant and find out who children, young people and vulnerable adults might be coming into contact with online, and what they are seeing, hearing and talking about.
Young people can see all kinds of things online via social media and through online gaming. The popularity of online gaming has given extremists more opportunities to make their narratives sound more mainstream and reach out and radicalise others.
Extremist groups, of all ideologies, utilise social media platforms and internet forums, which they know are full of people reaching out online to combat feelings of isolation and loneliness, stress, anxiety or rejection.
The NSPCC has extensive resources to support you in safeguarding children from radicalisation.
Grooming
Both adults and children are at risk of online grooming. Adults with care and support needs and children are at higher risk of online grooming than the wider population. Grooming can be for sexual exploitation, sexual abuse, child criminal exploitation, financial abuse, radicalisation or predatory marriage.
When you are assessing risks around grooming or sexual abuse, think about people’s online lives, in addition to their in-person relationships. Ask questions about online contacts and activity. Find out how much time they spend online. Talk about the risks of sharing private images online. Talk about the difficulties of identifying people online. Support people to understand how their own behaviour may harm or impact others too. Remind people that sharing nude or indecent images online, even if it is a friend, sibling, boyfriend/girlfriend, can be a criminal offence. Develop your own knowledge of how and why young and vulnerable people engage in technology assisted behaviour
An Oxfordshire Themed SAR on Homelessness considered 9 local deaths, 3 of whom were women- aged between 30-69.
These nine people exemplify to varying degrees, experiences of multiple exclusion homelessness and self-neglect. This comprises extreme marginalisation that includes childhood trauma, physical and mental ill-health, substance misuse and experiences of institutional care . Adverse Childhood Experiences (ACEs) can include abuse and neglect, domestic abuse, poverty and parental mental illness or substance misuse. Individuals in the sample demonstrate that, for many, street sleeping is a long-term experience and associated with tri-morbidity (impairments arising from a combination of mentalill-health, physical ill-health and drug and/or alcohol misuse) and premature mortality.
The SAR outlines a model of good practice to be constructed in relation to adults who self-neglect, which of course can be extended to working with children and their families, too. In line with Making Safeguarding Personal, the first domain focuses on practice with the individual.
It is recommended that direct practice is characterised by:
• A person-centred approach that comprises proactive rather than reactive engagement, and a detailed exploration of the person’s wishes, feelings, views, experiences, needs and desired outcomes; work to build motivation with a focus on a person’s fluctuating and conflicting hopes, fears and beliefs, and the barriers to change
• A combination of concerned and authoritative curiosity appears helpful, characterised by gentle persistence, skilled questioning, conveyed empathy and relationship-building skills; early and sustained intervention includes supporting people to engage with services, assertive outreach and maximising the opportunities that encounter brings;
• When faced with service refusal, there should be a full exploration of what may appear a lifestyle choice, with detailed discussion of what might lie behind a person’s refusal to engage; failing to explore “choices” prevents deeper analysis. It is helpful to build up a picture of the person’s history, and to address this “backstory”, which may include recognition of and work to address issues of loss and trauma in a person’s life experience that can underlie refusals to engage or manifest themselves in repetitive patterns;
• Comprehensive risk assessments are advised, especially in situations of service refusal and/or non-engagement, using recognised indicators to focus work on prevention and mitigation;
• Where possible involvement of family and friends in assessments and care planning but also, where appropriate, exploration of family dynamics, including the cared-for and care-giver relationship;
• Thorough mental health and mental capacity assessments, which include consideration of executive capacity; assumptions should not be made about people’s capacity to be in control of their own care and support.
• Careful preparation at the point of transition, for example hospital discharge, prison discharge, end of probation orders and placement commissioning.
• Use of advocacy where this might assist a person to engage with assessments, service provision and treatment. Thorough assessments, care plans and regular reviews, comprehensive enquiries into a person’s rehabilitation, resettlement and support needs; taking into account the negative effect of social isolation and housing status on wellbeing.
Read the full Themed SAR report by Professor Michael Preston-Shoot and Adi Cooper here
“Working with those who live street based lives” – 7 minute briefing
Ellie Atkins, who runs the Adult Social Care Complex Needs Service in Manchester has developed a series of videos which aim to change people’s thinking and actions about rough sleeping. These focus on a client called Beryl and looks at the steps taken to address her needs and includes an episode on executive functioning.
Beryl is just one example of the many people sleeping rough, that have care act needs reflective of Acquired Brain Injury, neurodivergence, substance misuse and PTSD. Ellie is sharing these videos to help people understand, commission, plan and deliver the ways of working required to prevent and address complex needs.
Watch the videos here: