SGPOLCORE22 Learning Disability and Autism Policy v1 by Provide Community

Learning

Disability and Autism Policy

Version: V1

Ratified by: Strategic Safeguarding Group

Date ratified: 10/02/2023

Job Title of author: Safeguarding Adult Lead

Reviewed by Committee or Expert Group Strategic Safeguarding Group

Equality Impact Assessed by: Safeguarding Adult Lead

1. Introduction

Provide Community Group recognise their responsibility for ensuring that all its staff and colleagues have a good understanding and awareness of how to support people with a Learning Disability and Autistic people. Staff have a legal duty to provide people with a Learning Disability and Autistic people with an equitable service; this means making services as easy to access for people with a Learning Disability or Autism as they are for people without a learning disability or Autism.

Reasonable Adjustments must be made to help individuals to better access health and social care. Provide Community Group acknowledges the unfair treatment and discrimination that people with a Learning Disability and Autistic people can face when accessing health and social services. By engaging with people with the lived experience and listening to what they tell us they need, Provide Community Group will strive to improve the experience of people with a learning Disability and Autistic people.

This policy sets out the principles and guidance that staff must follow to effectively support people with Learning Disability and Autistic people. This policy is guided by national policy and NHS guidance and the following legislation must be followed in relation to equality of service provision:

• Equality Act 2010

• Accessible Information Standard 2017

• Care Act 2014

• Autism Act 2009

• Mental Capacity Act 2005

• Human Rights Act 1998

2. Background

Background and National Campaigns

Mencap (Learning Disability Charity) published a report called Death by Indifference (2007) this detailed six cases that demonstrated discrimination towards people with learning disabilities within the NHS, leading to shortcomings in care received that ultimately resulted in people’s death. This report found there were 1200 avoidable deaths of people with Learning Disability in one year. This number has not changed today.

Healthcare for all (2008), the report of the Independent Inquiry into Death by Indifference concluded that people with learning disabilities appear to receive less effective care than they are entitled to, with evidence of a significant level of avoidable suffering and a high likelihood that deaths are occurring that could be avoided

Six Lives (2009), the report of the Health Ombudsman into the cases highlighted in Death by Indifference this showed some significant and distressing failures in health and social care services, leading to situations where people with learning disabilities experienced prolonged suffering and inappropriate care.

Death by Indifference 74 Deaths and Counting (2012)

A progress report 5 years on from the original report looked at continued complaints raised to Mencap regarding poor care and unequal treatment.

Common themes are:

• Lack of basic care

• Poor communication

• Delays in diagnosis & treatment

• Failure to recognise pain

• Do Not Attempt Cardiopulmonary resuscitation; DNACPR and lack of regard for the Mental Capacity Act (MCA)

• Diagnostic overshadowing

Confidential Inquiry into the deaths of people with learning disabilities (CIPOLD) 2013

The University of Bristol produced a report of findings from a Confidential Inquiry into the deaths of people with learning disabilities (CIPOLD) It was tasked with investigating the avoidable or premature deaths of people with learning disabilities through a series of retrospective reviews.

The most common reasons for premature deaths were:

• Delays in diagnosis

• Delays in treatment

• Needs not identified

• Appropriate care not given in response to changing needs

The Care Act 2014 The Care Act strengthens the rights of people with learning disabilities and their family carers. It promotes fairer, more personalised care

Treat me Well Campaign – 2017 Treat Me Well aims to transform how the NHS treats people with a learning disability in hospital. The campaign advocates equal access to healthcare for people with a learning disability and argues that small adjustments can go a long way. The report finds:

• 75% of people with a learning disability said that hospital staff explaining things to them in a way that is easy to understand would improve their experience of going to hospital

• 66% of healthcare professionals want more learning disability training.

• 50% of healthcare professionals suggest that a lack of knowledge around learning disability might be contributing to avoidable deaths.

• 65% of healthcare staff said they had not had any training on Learning Disability and or Autistic person.

LeDeR 2017 Learning from Lives and Deaths – LeDeR is a service improvement programme for people with a learning disability and autistic people. Established in 2017 and funded by NHS England and NHS Improvement, it works to:

• Improve care for people with a learning disability and autistic people.

• Reduce health inequalities for people with a learning disability and autistic people.

• Prevent people with a learning disability and autistic people from early deaths.

A LeDeR review will look at key episodes of health and social care the person received that may have been relevant to their overall health outcomes. As well as looking for areas that need improvement, LeDeR also shares examples of good practice across the country to help reduce inequalities in care for people with a learning disability and autistic people. LeDeR annual reports, including an easy read version can be accessed at LeDeR - Annual reports.

The NHS Long Term Plan 2019- seeks to improve the health of people living with Learning Disabilities and/or Autistic people by:

• Improving community-based support

• Developing clearer and more widespread focus on the needs of autistic people and their families

• Ensure NHS provide good quality health, care and treatment to people with a learning disability and autistic people and their families

• Reducing health inequalities

• Championing the insight and strengths of people with lived experience and their families

• Ensuring that the whole NHS has an awareness of the needs of people with a learning disability and autistic people

3. Purpose

Provide Community Group is committed to:

• Ensuring people with Learning Disability and Autistic people have fair, equitable access to services.

• Maximising people’s choice, control and inclusion and protecting their human rights.

• Ensuring all staff know how to make reasonable adjustments so that people with a Learning Disability and Autistic people get the care they need when they need it.

• Promoting person centred care.

• Increasing understanding and awareness for all staff around Learning Disability and or Autism.

• Working in collaboration with people who have a lived experience; to provide training for all staff that is meaningful, insightful and changes attitudes.

• Working in partnership to safeguard vulnerable adults and children

• Supporting service users when accessing Provide Community Group services by working in a collaborative way to ensure reasonable adjustments are made.

• Reporting into the NHS LeDer programme to help ensure that there is national oversight and independent scrutiny of preventable deaths of people with Learning Disabilities and Autistic person.

• Supporting Learning Disability Champions to become expert resources for staff and service users.

• Working in collaboration with our Learning Disability Community providers to ensure people with Learning Disability and Autistic people have their health and social needs met in their community; avoiding unnecessary hospital admissions.

The policy aims:

• To enable staff to develop a better understanding of people with Learning Disability and Autistic people therefore helping them identify and meet the individual needs of a person with Learning Disability and Autistic people.

• To support people with Learning Disabilities and Autistic people to have equitable access to our services across Healthcare and Social Wellbeing services.

• To support staff in providing equality of access to services, easy to understand information, best interest decision making and the right support for familiar staff and family carers.

• Increase staffs understanding of what a Reasonable adjustment is.

• To ensure staff are aware that making reasonable adjustments for people with Learning Disabilities and Autistic people is a legal requirement which must be embedded in everyday practice.

4. Duties

This guidance applies to all staff and colleagues employed by Provide Community Group and includes:

• All Provide commissioned provider services (adult and children)

• Provide Specialist Learning Disability services

• Services that work in partnership with Provide

• Temporary, voluntary, contracted, or self-employed staff working on behalf of Provide

• Bank/agency staff working on behalf of Provide

• Provide Home Care services

Identifying service users with Learning Disability

Ward/department and Service Leads are responsible for identifying if a person is Autistic or has a Learning Disability.

Staff can identify if a person has a Learning Disability on SystmOne by the following icon, which is displayed in the Demographic box with a drop box like this

Staff can add the icon to a patient SystmOne record if a patient has completed a Health Access Card or if the GP referral states person has a Learning Disability. The Provide Learning Disabilities clinical template is found under the clinical tree where staff can tick if the person has a Learning Disability. Once ticked and patient’s record is saved, the icon will appear.

(NHS England are currently working on a digital flagging system that will be available on the NHS spine. NHS England » Reasonable adjustments)

Staff should report the death of a person who has a learning disability or Autistic person via the online link at LeDeR - Home Once reported staff should complete a DATIX. If staff have concerns about the death of a person with a learning disability or an autistic personthey should discuss this with the Safeguarding team as well as report to LeDeR. Once reported the LeDeR process will begin with an initial review and if required a more focussed review will take place.

5. Provide’s Learning Disability and Autism Strategy 2020

The strategy sets out a clear vision on how we can work differently and more effectively to improve the lives of individuals who have a learning disability, and or Autism, in our community. The aspiration of and for people with learning disabilities or Autistic people are, unsurprisingly the same as the rest of us, to be listened to as individuals, to have choices about the way they live their lives, and to enjoy good health. In developing the strategy, we want to ensure that people receiving treatment, care, and support from us, whether that be because of another health concern, a Learning Disability or Autism, do not encounter inequalities and that our staff have the skills and knowledge to help them identify when a person has a learning disability and or Autism, so they can be proactive in addressing those care and support needs. This maybe a process of engaging with the individuals, families or carers and our partners so that we can respond appropriately and when needed.

We want to increase our staff’s knowledge and understanding of how to make Reasonable Adjustments to ensure Autistic people and people with a Learning Disability can live long and healthy lives. We want to reduce the number of avoidable deaths for people with a Learning Disability and Autistic people.

Link to strategy at Provide Platform: https://www.providecommunityplatform.co.uk/Interact/Pages/Content/Document.aspx

?id=3872&SearchId=0&utm_source=interact&utm_medium=category_search&utm_t erm=*

6. Definitions

Learning Disability

A learning disability is different for every person who has one. There are some things that are common for everyone including a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money.

This can affect someone for their whole life. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people. The level of support someone needs depends on the individual. For example, 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 fulltime care and support with every aspect of their life – theymay also have physical disabilities. It is estimated that 1.4 million people in the UK have a learning disability and around 350,000 have a severe learning disability. A Learning Disability is different for everyone. No two people are the same.

What causes a learning disability?

Wedo not always know why a person has a learning disability. Sometimes it is because a person's brain development is affected, either before they are born, during their birth or in early childhood. This can be caused by things such as:

• the mother becoming ill in pregnancy

• problems during the birth that stop enough oxygen getting to the brain

• the unborn baby having some genes passed on from its parents that make having a learning disability more likely

• illness, such as meningitis, or injury in early childhood

There are some health conditions where you may be more likely to have a learning disability. For example, everyone with Downs Syndrome has some level of learning disability, and so do many people with Cerebral Palsy. Some people with epilepsy, also have a learning disability.

Autism

Is a life-long condition that affects how people perceive the world and interact with others. Autistic people see, hear and feel the world differently to other people. Autism is not an illness or a disease and often people feel that being autistic is a fundamental aspect of their identity. Autism is a spectrum condition - all autistic people share certain difficulties which will affect them in different ways. Autism is NOT a Mental Health condition. Not every Autistic person has a learning disability. Autistic people can have similar traits :

• problems listening, concentrating and understanding

• frequent repetition of words and phrases

• taking things literally

• delayed or absent speech

• difficulty sensing and interpreting people’s feelings

• difficulty expressing feelings

• over or under sensitivity to sound, touch, taste, smell or light

• rituals or repetitive behaviors

• disliking changes to routine

• stimming

The National Autistic Society estimates that there are 700,000 Autistic people in the UK which accounts for 1.1% of the population. Around 40% of autistic people have a learning disability, compared with just 1% of people without Autism. A clinical assessment is needed to diagnose learning disability (round 1 in 10 people with a learning disability are autistic). 3 in 10 autistic people speak few or no words. 20% of Autistic people will have some level of learning Disability.

How we describe a person is important:

Autistic people have told us they do not like the term Autism Spectrum Disorder (ASD) and person with Autism. ASD refers to Autism as a disorder and most Autistic people feel this is a negative way to describe Autism. A person with Autism suggests that they are carrying something they can put down or discard. Unless told otherwise by the individual, staff should avoid the term ASD and should instead refer to the Autistic person. (reference: person with lived experience; OMMT 2022)

Stimming

Stimming or self-stimming behaviour includes arm or hand flapping, finger-flicking, rocking, jumping, spinning or twirling, head banging, and complex body movements. It includes repetitive use of an object such as flicking a rubber band or twirling a piece of string, or repetitive activities involving the senses (such as repeatedly feeling a particular texture)

Why do some autistic people stim?

Although stimming varies from person to person, the reasons behind it may be the same.

• For enjoyment.

• An attempt to gain sensory input, e.g. rocking may be a way to stimulate the balance (vestibular) system; hand flapping may provide visual stimulation.

• An attempt to reduce sensory input, e.g. focusing on one particular sound may reduce the impact of a loud, distressing environment; this may be particularly seen in social settings or in a hospital environment such as a busy clinic or A and E department.

• To deal with stress or anxiety and to block out uncertainty.

Staff should not attempt to stop someone from stimming, it is often very enjoyable and a way to reduce their stress. However, if stimming is self-injurious ask yourself does the behavior restrict the persons opportunities, cause distress or discomfort? If so you will need to work with the individual and or people who know them well to support the person to modify the behavior or reduce their reliance on it.

Through understanding the reasons behind why that a person may be stimming, staff are much more likely to be able to make a reasonable adjustment that may help the person to cope in a given situation for example in a clinic or hospital setting. (National Autistic Society)

Learning Disability Vs Learning Difficulty

Learning Disability is often confused with Learning Difficulty. It is important staff understand the difference. A learning Disability is a condition which affects learning and intelligence across all areas of life, for a person’s whole life.

A Learning Difficulty is an obstacle to a specific form of learning but does not affect the persons overall IQ, nor does it hinder their life skills. Examples of Learning difficulties are Dyslexia and Dyscalculia.

Profound and Multiple Learning Disabilities (PMLD)

People with profound and multiple learning disabilities (PMLD) are, like everyone, unique individuals. Like everyone, they need to be included and respected, and with the right support they can live a fulfilling life. Due to their complex needs people with PMLD can get complications that are life threatening from things like constipation, and colds.

People with PMLD are likely to be using or developing skills that generally appear at a very early stage of development, for example learning about cause and effect, and turn- taking. They may show preferences of things they like or dislike in everyday situations as a form of simple choice making.

People with PMLD will have more than one disability. They may have sensory or physical disabilities, complex health needs or mental health difficulties and they may at times present with behaviours that challenge us. Many people may use a wheelchair. Others may have difficulty with movement, for example they may need support to control and vary their posture. They may experience the world in different ways because of sensory impairments, like vision or hearing loss, may have sensory processing difficulties, and may have complex health needs. They may be ‘technology dependent’, for example needing oxygen, tube feeding or suctioning equipment.

People with PMLD may not be able to communicate pain or their symptoms easily. In most cases, they will need others such as family or support staff who know them well to interpret their unique ways of communicating and introduce hospital staff to the communication information, detailed in the person’s hospital passport. Staff should consider their own communication style, are you being understood? Mencap offer some tips when communicating with people with a Learning Disability – (see Appendix A).

7. Reasonable Adjustments

The Equality Act 2010, dictatesthat all disabled people (this includes learning disability and Autism) have the right to reasonable adjustments when using public services, including Healthcare. Staff have a legal duty under the act, to put in place reasonable adjustments for people who need them. These adjustments remove barriers that disabled people would otherwise face in accessing these services. Making reasonable adjustments means ensuring disabled people have equal access to good quality healthcare. Treating people equally doesn’t necessarily mean giving them the same, people with a Learning Disability and Autistic people may need extra support given in a way that helps them. Aservice user with the lived experience described a reasonable adjustment as:

“doing something to support someone which may save a life”…….

Reasonable adjustments may include removing physical barriers to accessing services, but importantly also include changing the ways in which services are delivered and ensuring that policies, procedures and staff training all enable services to work equally well for people with learning disabilities. The ‘reasonable adjustments’ for patients will be based on individual need. People with a Learning Disability and Autistic people have told us what reasonable

adjustments mean to them, and how we can help. Staff should consider the following:

• Extra time available at appointments

• Staff having patience when communicating

• Staff speaking out when they see poor practice

• Staff understanding that a challenging behaviour is likely to be a sign of distress

• Always assume the person can decide for themselves - (follow Mental Capacity Act 2005)

• Staff using information taken from their Health passport or All about me document

• Recognise that the person needs support, and recognise who can help with this e.g family/carers

• Health professionals need to consider another reason for behaviour rather that thinking it’s because of the person’s learning disability or Autism

• Listening to and acting upon information provided by families, carers or others who know the person well

• If you see someone having a meltdown, ask what you can do to help

• Understanding and recognising the importance of a person’s family and or carers

• Treat the person with respect

Reasonable Adjustments do not have to be big and complicated, or have a cost implication. Small changes really can make a difference. Staff should apply the principles of the Ask, Listen Do project:

Ask: Ask people what they think, feel and need

Listen: to the person in whatever way they can communicate Do: what the person decides they want or need, putting their views, experiences and decisions above all others.

Staff should see Appendix D for Mencap’s top 10 Reasonable Adjustments.

Autistic people and people with a learning disability have often endured difficult experiences of bullying, neglect, poorly managed transitions and abuse, it is important for staff to acknowledge this and avoid making judgements or assumptions.

To ensure people with learning disabilities and autistic people receive an equitable outcome and good healthcare, staff need to be flexible in their approach to individuals and plan person centred care. Reasonable adjustments must be unique for the individual Staff should make every effort to establish what reasonable adjustments the person needs before an appointment. When offering an appointment either via telephone or letter, staff should enquire if extra support is needed in order for the person to access the service. The Learning Disability Champions are working with service leads to consider a standard letter template which will include asking about reasonable adjustments.

Example of a Reasonable Adjustment:

Follow the link to read Jake’s story https://thelincolnite.co.uk/2022/10/praise-for-hospital-staff-who-ensured-autisticteens-vital-heart-scan/

8. Diagnostic Overshadowing

Diagnostic overshadowing refers to the negative bias which impacts a clinician’s judgment when assessing the presenting behaviour/s of a person with learning disabilities or Autistic person. People with learning disabilities have a much higher risk of experiencing a variety of diseases and conditions it is therefore vital that physiological or pathological cause of behaviour change are explored. If they are not, people with learning disabilities can suffer poor care and may even die when their death could be avoided.

An example of Diagnostic Overshadowing would be when a health professional interprets a person with a Learning Disability or Autistic person rubbing their head as a behaviour linked to the learning Disability or Autism and fails to investigate a possible underlying health cause. Another example is a health professional who makes assumptions about a person’s quality of life because of their Learning Disability and or Autism. This can lead to no treatment being offered for serious conditions such as Cancer. It can also lead to the inappropriate use of Do Not Attempt Cardiopulmonary resuscitate (DNACPR) Such practice is discriminatory and unlawful.

It is important that staff have an understanding and awareness of Diagnostic Overshadowing to enable them to challenge and report such practice. Staff have a crucial role to play in ensuring that health professionals see the person and not just their disability.

Staff should seek support and advice from their line manager and Learning Disability Champion or they can speak to the Safeguarding Team if they are concerned about Diagnostic Overshadowing and should refer to Provides HRPOL01 Freedom to Speak up policy.

9. Making Information Accessible

The Accessible Information Standard 2017, aims to make sure that people who have a disability, impairment or sensory loss get information that they can access and understand. Since 2016 all NHS providers have a legal responsibility under this act. This act includes people with Learning Disability and or Autistic people. Staff should consider and enquire how a person wants to receive communication

such as appointment letters. Can the person read? Would text or email be more suitable and will easy read guide be helpful?

Staff can find easy read guides for a variety of conditions and treatments at www.easyhealth.org

Provide Community Group want to ensure all their communications are available in Easy read format and will work with Easyreaduk to produce the guides. Managers and team leads are responsible for reviewing their current patient information and working with the Comms team to develop easy read guides.

The NHS Ask Listen Do Project aims to make it easy for people with a Learning Disability and Autistic people to give feedback, raise concerns and make complaints. Staff should ensure all service users who have a learning Disability or are Autistic are offered the easy read guides for how to give feedback, raise concerns or to make a complaint. These are available on the Provide Community Group platform see link :

https://www.providecommunityplatform.co.uk/Interact/Pages/Section/ContentListing.a spx?subsection=4493

Also available from the Customer service department and Care Coordination Centre.

For further information see NHS England » Ask Listen Do

10. Learning Disability Champions

Provide Community Group have a growing number of Learning Disability Champions who act as a resource to help staff improve the care that Autistic people and people with a Learning Disability. Staff should ensure they have identified a Champion within their service. All Provide services are encouraged to identify at least one Learning Disability Champion. The Learning Disability Champion programme is led by the organisations Safeguarding Adult Lead. For more information please contact provide.safeguarding@nhs.net

LD Champion role description see Appendix C

Staff can access a range of resources on the Provide digital platform: these include Easy read resources, training videos, links to other services for support, information on Reasonable Adjustments and help with sourcing Makaton interpreters when required.

11. Training

From July 2022, there is a requirement for all Care Quality Commission (CQC) registered establishments to undertake person centred Learning Disability and Autism training; this training must be person centred. This is in conjunction with the introduction of the Oliver McGowan Mandatory Training which will become compulsory from 2023 and is designed to ensure knowledge and understanding of Learning Disabilities and Autism.

The Oliver McGowan Mandatory Training on Learning Disability and Autism (OMMT)

In November 2019, the Government published 'Right to be heard' its response to the consultation on proposals for introducing mandatory learning disability and Autistic person training for health and social care staff

The response included a commitment to develop a standardised training package. The training will draw on existing best practice, the expertise of Autistic people, people with a Learning Disability and family carers as well as subject matter experts.

The training is named after Oliver McGowan, whose death shone a light on the need for health and social care staff to have better training. To find out more about Oliver, visit the Oliver McGowan campaign ® website or watch Oliver's mother, Paula McGowan OBE, tell Oliver's story and explain why the training is taking place.

Training Structure

Tier 1  - All Provide Community Group staff

Tier 1 of The Oliver McGowan Mandatory Training on Learning Disability and Autism is for people who require general awareness of the support autistic people or people with a learning disability may need.

Tier 2 - Provide Community Group Specialist Learning Disability Services

Tier 2 of The Oliver McGowan Mandatory Training on Learning Disability and Autism is for people who may need to provide care and support for autistic people or people with a learning disability.

The Oliver McGowan Mandatory Training on Learning Disability and Autism is standardised and to complete it individuals must:

Complete the e learning package and for:

• Tier 1 – the 1 hour online interactive session co-delivered by a person with a learning disability and an autistic person along with a facilitator or

• Tier 2 – the 1 day face to face training co-delivered a person with a learning disability and an autistic person and trainer

The Head of Talent and Learning and newly appointed Head of Training Social Care are working with the Integrated Care Board (ICB previously CCG) to plan the implementation of the OMMT. Part one of the training is now available on ESR and all staff should complete this online first level. It may take up to six months to complete both parts in the early stages as capacity to deliver the online interactive and face to face elements build for The Oliver McGowan Mandatory Training on Learning Disability and Autism.

Staff at Provide Community Group complete person centred Learning Disability Training at Induction. The Learning Disability Champions have produced a Training guide for all staff which is available on Provides Digital Platform. See link https://www.providecommunityplatform.co.uk/Interact/Pages/Content/Document.aspx ?id=5124&utm_source=interact&utm_medium=side_menu_category

This training has been developed and updated with an emphasis on improving the understanding of staff around reasonable adjustments and takes its content from the OMMT trial that was conducted in 2021.

12. Community Learning Disability Teams

The Community Adult Teams provide specialist healthcare to adults with learning disabilities whose needs cannot be met by mainstream services alone. These teams help to ensure that people with learning disabilities receive the same care and treatment as everyone else when there is a concern about their physical or mental health. Provide staff should be aware of their local community teams and how to make referrals if needed (see appendix B )

Children’s Learning Disability services are provided by EPUT and delivered across Essex, Southend and Thurrock referrals can be made by professionals.

13. References

National Autism Society www.autism.org.uk

Mencap- www.mencap.org.uk

NHS Learning Disability www.nhs.uk/conditions/learning-disabilities/

The Care Act 2014 www.legislation.gov.uk/ukpga/2014/23/contents/enacted

Learning from Lives and Deaths

People with a Learning Disability and autistic people (LeDeR) LeDeR - Home

The NHS Long Term Plan NHS Long Term Plan Easy Read resources www.easyhealth.org.uk

Health Education England The Oliver McGowan Mandatory Training on Learning Disability and Autism | Health Education England (hee.nhs.uk)

Ask Listen Do NHS England » Ask Listen Do

Confidential enquiry into deaths of people with Learning Disabilities CIPOLD 2013 –HQIP

Right to be Heard 2019 ‘Right to be heard’: The Government’s response to the consultation on learning disability and autism training for health and care staff (publishing.service.gov.uk)

Appendix A: Top Tips for Communication

Remember, everybody is unique, so take the time to ask the person you're communicating with what works best for them. Listen carefully and patiently, and persevere, even if you don’t understand the first or second time.

Even when someone is unable to communicate verbally, it is important to involve and include that person in communication relevant to them and it is your responsibility to make that possible

Being a good communicator

To be a good communicator with people with a learning disability you need to:

• use accessible language

• avoid jargon or long words that might be hard to understand.

• be prepared to use different communication tools

• follow the lead of the person you're communicating with

• go at the pace of the person you're communicating with, check you have understood and be creative.

Then…

• Find a good place to communicate in - somewhere without distraction. If you are talking to a large group be aware that some people may find this difficult.

• Ask open questions; questions that don't have a simple yes or no answer.

• Check with the person that you understand what they are saying e.g. "the TV isn't working? Is that right?"

• If the person wants to take you to show you something, go with them.

• Watch the person; they may tell you things by their body language and facial expressions.

• Learn from experience - you will need to be more observant and don't feel awkward about asking parents or carers for their help.

• Try drawing - even if your drawing isn't great, it might still be helpful.

• Take your time, don't rush communication.

• Use gestures and facial expressions. If you're asking if someone is happy or unhappy, make your facial expression unhappy to reinforce what you're saying.

• Be aware that some people find it easier to use real objects to communicate, but photos and pictures can really help too.

In person: Many people with a learning disability prefer face to face and one to one communication.

In Writing: use bigger text and bullet points, and keep writing at a minimum. Too much colour can make reading harder for someone as well.

On the phone: Speak slowly and clearly, using easy to understand words.

Remember, all communication is meaningful, but you may need to work harder to understand.

“Sometimes I’ve got the words in my mind, and I’m trying to explain it in the best possible way, but it doesn’t always come out.”

Resources follow link : Communicating with people with a learning disability | Mencap

Appendix B: Contact Details for Community Learning Disability Leads

Adults:

Essex- Hertfordshire Partnership Foundation Trust (HPFT) Community LD Telephone 01376 308704

Thurrock- NELFT online referral at Learning disabilities | NELFT NHS Foundation Trust Telephone: 02089288300

Southend – EPUT Telephone 0300 123 0808

Cambridge and Peterborough - Telephone 0345 045 5202

Redbridge- NELFT Telephone 020870 8229

Waltham Forest- Telephone 020 8521 0337

Barking and Dagenham- NELFT Telephone 0300 555 1201

Havering- Telephone 01708 433446

Suffolk – Telephone 01502 535020 referrals must be made via GP

Hertfordshire, Buckinghamshire and Norfolk- HPFT Telephone 01707 253800

Scarborough -Telephone 01723 580940

Congleton – Telephone 01625 509013

Worksop- Telephone 0115 8043100

Doncaster and Brigg – Telephone 01302 796467

Buxton -Telephone 01283 227075

Loughborough – Telephone 0116 2954528

Children:

Southend, Thurrock and Essex 5-18years old. Telephone 01206 334026 or email clds@nhs.net

Appendix C: The Role Of The Learning Disability and Autism Champion

As a Learning Disability and Autism Champion your role will be to:

• Act as an advocate when people with a Learning Disability or Autistic people need support including advice and support to their carers and families.

• Undertake additional training to develop expert knowledge and skills in both adult and children’s services

• Support staff to understand how to make reasonable adjustments to accommodate fair access for people with Learning Disability and or Autistic people including, but not exhaustive: longer appointments, consideration of space, light, access and communication needs

• Contribute to the production and provision of information to service users in an accessible format, in accordance with Provide Community Group policy and procedures

• Contribute to the learning environment, including training, induction and continuous professional development for staff to ensure that they understand how to take account of the needs of people who have a Learning Disability or are Autistic

• Be a key contact in the organisation acting as a mentor to staff to build confidence and knowledge when working with someone who has a Learning Disability and or Autistic people

• Understand and keep abreast with local and regional resources and help staff to signpost to the most appropriate pathway where necessary

• Raise awareness of the needs and aspiration of people with a Learning Disability and or Autistic people across the organisation, ensuring that information is available and staff are aware of its use.

• Contribute to keeping the online platform directory up to date

• Help people with a Learning Disability and or Autistic people to have their voices heard within Provide Community Group

• Act as a resource so that all practical steps can be taken to assist people with Learning Disability and or Autistic people to have choice and make their own decisions in line with the Mental Capacity Act.

• Promote the safety and well-being of service users who have a Learning Disability and or Autistic people, this includes staff.

• Ensure that untoward incidents are regularly reported to ensure appropriate action is taken within the organisation.

Appendix D: Treat Me Well Top 10 Reasonable Adjustments

Here are the Treat me well top 10 reasonable adjustments:

1. Speak clearly and use simple words. Don’t be patronising, but do check understanding. It is really important not to make assumptions that someone has understood information they have been given.

2. Take your time. People with a learning disability may need a bit longer than other patients to be able to understand information they are given and to make themselves understood. Just ten extra minutes can make a big difference to many people.

3. Work with supporters. This could be a support worker or family member. Supporters can be really important, particularly for people with profound and multiple learning disability, but remember to talk to the person directly and support them to make decisions - supporters are there to help you do this!

4. Be flexible with appointment times. Many people with a learning disability will find it easier coming to hospital when it is quieter, so an appointment at the very beginning or very end of the day might make their appointment go more smoothly. They may also need an appointment at a time when their supporter is able to accompany them.

5. Make sure people can get into and around the hospital. This includes ensuring there are no physical barriers for people using wheelchairs or with mobility issues, but also making sure signs in the hospital are as easy to understand as possible.

6. Provide a quiet place to wait. Hospitals are often busy, noisy places and this can be overwhelming for many people with a learning disability. Having a quiet place to wait can prevent people getting anxious and having to leave the hospital. Many people also find waiting a long time very difficult.

7. Listen to your learning disability liaison nurse. Most hospitals have learning disability liaison nurses who know lots about reasonable adjustments and can help you to support your patient. Ask your learning disability nurse if you know you will be seeing a patient with a learning disability.

8. Use hospital passports. These are a patient-held, personalised record of what the person needs, how they communicate, what they like and don’t like. Lots of people with a learning disability have hospital passports and reading them will make your job a lot easier!

9. Provide written information in Easy Read format. This means people are much more likely to read and understand information about their appointments, procedures and results. This is also a requirement of the NHS's own Accessible Information Standard.

10.Always ask the person what they need. Reasonable adjustments are about what the person in front of you needs and they know that better than anyone. Don’t make assumptions, just ask the person-and any family or carers with them and do your best to provide the support they need.

Taken from Mencap Treat Me Well campaign Treat me well top 10 reasonable adjustments.pdf (mencap.org.uk)

EQUALITY IMPACT ASSESSMENT TEMPLATE: Stage 1: ‘Screening’

Name of project/policy/strategy (hereafter referred to as “initiative”):

Learning Disability and Autism Policy

Provide a brief summary (bullet points) of the aims of the initiative and main activities:

Project/Policy Manager: Safeguarding Adult Lead Date: December 2022

This stage establishes whether a proposed initiative will have an impact from an equality perspective on any particular group of people or community – i.e. on the grounds of race (incl. religion/faith), gender (incl. sexual orientation), age, disability, or whether it is “equality neutral” (i.e. have no effect either positive or negative). In the case of gender, consider whether men and women are affected differently.

Q1. Who will benefit from this initiative? Is there likely to be a positive impact on specific groups/communities (whether or not they are the intended beneficiaries), and if so, how? Or is it clear at this stage that it will be equality “neutral”? i.e. will have no particular effect on any group.

All people with a Learning Disability and Autistic people

Q2. Is there likely to be an adverse impact on one or more minority/under-represented or community groups as a result of this initiative? If so, who may be affected and why? Or is it clear at this stage that it will be equality “neutral”?

Q3. Is the impact of the initiative – whether positive or negative - significant enough to warrant a more detailed assessment (Stage 2 – see guidance)? If not, will there be monitoring and review to assess the impact over a period time? Briefly (bullet points) give reasons for your answer and any steps you are taking to address particular issues, including any consultation with staff or external groups/agencies.

Review policy in 6 months

Guidelines: Things to consider

Equality impact assessments at Provide take account of relevant equality legislation and include age, (i.e. young and old,); race and ethnicity, gender, disability, religion and faith, and sexual orientation.

The initiative may have a positive, negative or neutral impact, i.e. have no particular effect on the group/community.

Where a negative (i.e. adverse) impact is identified, it may be appropriate to make a more detailed EIA (see Stage 2), or, as important, take early action to redress this – e.g. by abandoning or modifying the initiative. NB: If the initiative contravenes equality legislation, it must be abandoned or modified.

Where an initiative has a positive impact on groups/community relations, the EIA should make this explicit, to enable the outcomes to be monitored over its lifespan.

Where there is a positive impact on particular groups does this mean there could be an adverse impact on others, and if so can this be justified? - e.g. are there other existing or planned initiatives which redress this?

It may not be possible to provide detailed answers to some of these questions at the start of the initiative. The EIA may identify a lack of relevant data, and that data-gathering is a specific action required to inform the initiative as it develops, and also to form part of a continuing evaluation and review process.

It is envisaged that it will be relatively rare for full impact assessments to be carried out at Provide. Usually, where there are particular problems identified in the screening stage, it is envisaged that the approach will be amended at this stage, and/or setting up a monitoring/evaluation system to review a policy’s impact over time.

EQUALITY IMPACT ASSESSMENT TEMPLATE: Stage 2:

(To be used where the ‘screening phase has identified a substantial problem/concern)

This stage examines the initiative in more detail in order to obtain further information where required about its potential adverse or positive impact from an equality perspective. It will help inform whether any action needs to be taken and may form part of a continuing assessment framework as the initiative develops.

Q1. What data/information is there on the target beneficiary groups/communities? Are any of these groups under- or over-represented? Do they have access to the same resources? What are your sources of data and are there any gaps? Provide equitable processes and services

Q2. Is there a potential for this initiative to have a positive impact, such as tackling discrimination, promoting equality of opportunity and good community relations? If yes, how? Which are the main groups it will have an impact on?

Yes, this policy will have a positive impact on service users who have a Learning Disability and Autistic people, by challenging discrimination and by providing reasonable adjustments

Q3. Will the initiative have an adverse impact on any particular group or community/community relations? If yes, in what way? Will the impact be different for different groups – e.g. men and women?

Q4. Has there been consultation/is consultation planned with stakeholders/ beneficiaries/ staff who will be affected by the initiative? Summarise (bullet points) any important issues arising from the consultation.

Q5. Given your answers to the previous questions, how will your plans be revised to reduce/eliminate negative impact or enhance positive impact? Are there specific factors which need to be taken into account?

Q6. How will the initiative continue to be monitored and evaluated, including its impact on particular groups/ improving community relations? Where appropriate, identify any additional data that will be required. Yearly review to capture national changes and guidance

Guidelines: Things to consider

An initiative may have a positive impact on some sectors of the community but leave others excluded or feeling they are excluded. Consideration should be given to how this can be tackled or minimised. It is important to ensure that relevant groups/communities are identified who should be consulted. This may require taking positive action to engage with those groups who are traditionally less likely to respond to consultations, and could form a specific part of the initiative. The consultation process should form a meaningful part of the initiative as it develops, and help inform any future action.

If the EIA shows an adverse impact, is this because it contravenes any equality legislation? If so, the initiative must be modified or abandoned. There may be another way to meet the objective(s) of the initiative.

Further information:

Useful Websites www.equalityhumanrights.com Website for new Equality agency www.employers-forum.co.uk – Employers forum on disability www.efa.org.uk – Employers forum on age

EQUALITY IMPACT ASSESSMENT TEMPLATE: Stage One: ‘Screening’