Glossary

Last modified: March 1, 2019
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Advance Care Planning

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Advance Care Planning (ACP) enables someone to make future plans for their care and treatment, should they become unable to make decisions at any time in the future because of an illness. It is entirely voluntary: no one is under any pressure or obligation to make advance decisions.

Advance Decision

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Part of Advance Care Planning, an advance decision allows someone to decide about specific treatments that they do not want to receive in the future. Its purpose is to ensure that, if they are not able to make decisions at the time, they are not forced to receive treatment that they would not want.

Advance Statement

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Part of Advance Care Planning, an advance statement allows someone to describe their wishes and preferences about future care, should they be unable to make or communicate a decision or express their preferences at that time. An advance statement is not legally binding. However, those making a ‘best interests’ decision on the person’s behalf should take its contents into account if the person is unable to tell them what they would like. It is sometimes known as a Statement of Wishes.

Advocacy

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Sometimes it can be difficult to make a decision if the choices are hard to understand, especially if a person has a learning disability. An independent advocate is someone who can help a person make a decision about health care and other things.  An advocate helps them to understand what is being proposed, explains the choices available and helps there person to ask questions if they are not sure what to do. An advocate then supports them to make sure that your voice and your final decision are heard loud and clear.

Annual Health Check

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Anyone who has a learning disability over the age of 14 can ask for an Annual Health Check (AHC) from their GP Practice. Having an AHC is very important to maintain good health. If you have a learning disability or autism, it can be harder to look after yourself and notice things that might be a sign of illness. Having this regular review every year provides an opportunity for a thorough check-up. This means that any problems can be identified and treated before they get worse.

Assessment and Treatment Units

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An Assessment and Treatment Units (ATU) is a hospital inpatient unit designed to provide hopefully short-term secure placements for people with learning disabilities who have been admitted following a crisis in the community. While in the ATU, their needs are assessed and a treatment programme established, before arranging their discharge into the community, with support if necessary.

Autism

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Autism is a term used to describe a group of developmental disorders (also including Asperger Syndrome and Pathological Demand Avoidance) that affect a person across their lifespan, from childhood through to later life. The core difficulties individuals with autism have relate to:

  • communication and language,
  • social interaction and emotional expression, and
  • social imagination.

In addition, individuals with autism may differ from other people in relation to how they process information provided to them verbally or in writing, and their sensory processing may also be different. They may display patterns of restricted and repetitive behaviour. People with autism may experience anxiety, as a result of the core difficulties associated with the condition.

Backup Plan

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The Backup Plan included with this guide is designed to help your loved one and those around them to identify what they need to stay well, how to spot the signs or triggers that may make them feel unhappy, uncomfortable or unwell. It helps define what to do if a crisis occurs and how to get back on track after a crisis.

Behaviour Support Plan

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A Behaviour Support Plan aims to understand and manage behaviour in children and adults who have learning disabilities and display behaviour that others may find challenging. A good Behaviour Support Plan sets out possible triggers and provides alternative ways of meeting needs to avoid the person resorting to challenging behaviour. All strategies should be based upon the least restrictive principles in relation to managing risk.

Best interest principles

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Section 1 of the Mental Capacity Act (2005) sets out the five ‘statutory principles’ (the values) that underpin the legal requirements in the Act. 

Principle 1: A person must be assumed to have capacity unless it is established that s/he lacks capacity.

Principle 2: A person is not to be treated as unable to make a decision unless all practicable steps to help her/him to do so have been taken without success.

Principle 3: A person is not to be treated as unable to make a decision merely because s/he makes an unwise decision.

Principle 4: An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in her/his best interests.

Principle 5: Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

Best Interests

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If a person is unable to make a decision due to a lack of mental capacity (e.g. consent to medical treatment), any decision must be made in the person’s best interests in accordance with the ‘best interests’ process stated in the Mental Capacity Act (2005). (See above.)

Capacity

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Mental capacity is the ability of an individual to make their own decisions. Decisions about mental capacity where there is uncertainty are governed by the Mental Capacity Act (2005). A capacity check has to be for a specific reason and carried out at the time a decision needs to be made, as capacity can fluctuate.

Care Act Assessment

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Under the Care Act (2014), Local Authorities have a duty to carry out an assessment of anyone who appears to require care and support, regardless of their likely eligibility for state-funded care. If the person is then found eligible for support, the person has a right to have their assessed needs met.

Care and Treatment Review

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A Care and Treatment Review (CTR) is carried out for an adult living with a learning disability and/or autism who is either at risk of admission to, or is an inpatient within, a hospital Assessment and Treatment Unit (ATU). The aim of a CTR is to: avoid admission wherever possible, make sure that ongoing inpatient treatment meets the person’s needs and/or to plan their discharge from hospital. 

Care Programme Approach

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CPA provides a programme of community care which is managed by a care coordinator in line with an agreed care plan. CPA is for patients who have a mental health problem, a learning disability or who are otherwise vulnerable and need additional support in the community to stay safe and well.

Care Plan

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A Care Plan sets out in detail how a person’s needs are to be met. The Plan is then used by all those involved to ensure there is continuity of care, and needs are met appropriately and consistently.

Care Review

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A Care review is held to check that a person’s current needs are being met. The review will be carried out with the organisation responsible for providing the care and support.

Care, Education and Treatment Review

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A Care, Education and Treatment Review (CETR) is a review carried out for a child or young person (under the age of 18) living with a learning disability and/or autism who is either at risk of admission to, or is an inpatient within, a hospital assessment and treatment unit (ATU). The aim of a CTR will be to: avoid admission wherever possible, make sure that ongoing inpatient treatment meets the child or young person’s needs or to plan their discharge from hospital. A CETR is the same as a CTR but also includes education alongside health and care. 

Carer’s Assessment

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All Carers are entitled to have their needs assessed. The assessment will look at how caring affects your life and how to address your own physical, mental and emotional needs. It will also ask whether you wish to carry on caring, or whether there are any aspects of the caring role that you feel unable to continue with or take on. Contact adult social services at your local council and ask for a carer’s assessment.

Carer’s Emergency Card

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Your Council may have a Carer’s Emergency Card scheme, so have a look on your Council’s website. Once you have registered with the scheme, someone will help you draw up an emergency plan. You will then be given a card to carry around with you, which has telephone number to call and a unique identification number. The people running the scheme can then access your emergency plan and make arrangements for replacement care.

Carer’s Emergency Plan

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Many local carer services and local councils offer carers schemes where an emergency plan can be put into action if there is an emergency. Planning in advance, and talking about who could provide care if this happens, makes an emergency easier to deal with.

Challenging behaviour

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As set out in page 14 of Challenging Behaviour: A Unified Approach, Royal College of Psychiatrists et al (2007), ‘challenging behaviour’ is behaviour ‘of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others, and is likely to lead to responses that are restrictive, aversive or result in exclusion.’

Clinical Commissioning Group

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A Clinical Commissioning Group (CCG) is a clinically led organisation that has two important roles: they are responsible for commissioning community and secondary care services for their local populations and they have a legal duty to support quality improvement in general practice. Commissioning involves deciding what services are needed for diverse local populations and ensuring that they are provided.

Communication Passport

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A Communication Passport contains information about a person with a disability who may also have a communication difficulty. It helps them explain to others how they prefer to communicate and what is important to them. It can help staff, carers, medical personnel or anyone who is in contact with the person, to get to know that person better, provide reasonable adjustments and meet their needs more effectively.

Community Learning Disability Team

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A Community Learning Disability Team (CLDT) provides specialist secondary care and support for people with learning disabilities, and their families, if their needs are too complex to be managed by generic services. Teams consist of learning disability community nurses, therapists, a psychiatrist and a psychologist. They provide a range of learning disability-related services including core assessment, physical health, epilepsy, autism, mental health, dementia, behaviour seen as challenging, therapies, daily living skills, planning and advice, and information, communication and service liaison.

Community Mental Health Team

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These support people living in the community who have complex or serious mental health problems. The range of mental health professionals that work in the team can include psychiatrists, psychologists, community psychiatric nurses, social workers, and occupational therapists.

Consent

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Before anyone over 16 is given any medical treatment, test or examination, they must provide their consent. Consent can be given by the patient verbally, indicated non-verbally or in writing. It must be obtained voluntarily having provided the patient with sufficient information with which to make an informed choice. For children under 16 and for those who may lack the mental capacity to make the decision, there are additional steps and safeguards in place. In an emergency, obtaining consent may not be necessary. 

Continuing Health Care

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NHS Continuing Health Care (CHC) is a package of care for adults aged 18 or over, which is arranged and funded solely by the NHS. In order to receive NHS CHC funding, individuals have to be assessed by Clinical Commissioning Groups (CCGs) according to a legally prescribed decision-making process to determine whether the individual has a ‘primary health need’.

Crisis Cards

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A Crisis Card is designed to be carried in someone’s pocket or wallet. It should contain information about what to do and who to contact if the person is experiencing a crisis.

Crisis plan

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This is a personal care plan containing essential and detailed information about the care and support likely to be needed to help someone during a crisis. This could include early warning signs, available support to help prevent a crisis, personal care preferences, practical needs, advance planning decisions, an agreed list of personal supporters, and details of crisis services and named contacts.

De-escalation strategies

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The use of techniques (including verbal and non-verbal communication skills) aimed at defusing anger and averting aggression. PRN (as needed) medication can be used as part of a de‑escalation strategy but PRN medication used alone is not de‑escalation (NICE guideline NG10).

Deprivation of Liberty Safeguards (DoLS)

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DoLS is part of the Mental Capacity Act and aims to make sure that people who cannot consent to their care arrangements in a care home or hospital are looked after in a way that does not inappropriately restrict their freedom. To deprive a person of their liberty, care homes and hospitals must request standard authorisation from a local authority.

Dynamic Risk Register

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A Dynamic Register is used by local health and care teams to identify and prioritise the needs of people living with learning disabilities and/or autism who may also have behaviour that challenges or a mental illness, and may be risk of admission to a mental health hospital. This might be as a result of a change in needs and/or a failure in their care and support.

Education Health and Care Plan

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An Education, Health and Care Plan (EHCP) is for children and young people aged up to 25 who need more support than is available through special educational needs support. An EHCP will identify the individual educational, health and social needs and set out the additional support required to meet those needs.

Eligibility

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Each Health and Social Care service is contracted and organised to provide a specific range of support and services to those with ‘eligible’ needs. To work out who may be eligible, an assessment will be completed by the team concerned and a decision made based upon local or national criteria.

Emergency Duty Team

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An Emergency Duty Team (EDT) is a service that provides a 24-hour, 7-day-a-week response to emergency situations. They provide help and support where an adult or child in their Local Authority area is at risk of significant harm where it would not be safe, appropriate or lawful to delay the intervention to the next working day.

Flagging

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The term ‘flagging’ means the process of correctly recording all patient disability information by health care staff on their organisation’s computer health record system. This is important to make sure that they know what additional help and support patients with disabilities must have to meet their needs. This is called making reasonable adjustments. 

General Practitioner

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General practitioners (GPs) provide confidential patient consultations and initial medical care for patients of all ages within a community-based setting. GPs have knowledge of a broad range of illnesses, treat all common medical conditions and refer patients to hospitals and other medical services for urgent and specialist treatment.

Health Action Plan

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A Health Action Plan (HAP) is a personal support plan. It states what a person and others around them needs to do to keep them healthy. It lists what services and support they need to live a healthy life and should state clearly who will do what when.

Health and Care Diary

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Maintaining a Health and Care diary to record a history of health-related appointments, interventions and changes in symptoms or behaviour can be enormously helpful in keeping track of everything. This will help you to provide accurate information to your doctor or anyone else involved when needed to further inform decision making based upon accurate information rather than relying upon memory.

Hospital Passport

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A hospital passport is used by someone with a learning disability and/or autism to share essential personal information about them with hospital doctors and nurses to help them provide the right care and treatment while in hospital. This is especially important if the person has a communication difficulty. The document would typically contain details about things like: health conditions, medication, communication and personal care needs including mobility, likes, and dislikes.

Improving Access to Psychological Therapies

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This service provides confidential counselling for adults suffering from depression and anxiety disorders by providing evidence-based psychological therapies including Cognitive Behavioural Therapy.

Learning Disability

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A person with a learning disability is someone who, from childhood, has had a significantly reduced ability to understand new or complex information, or learn new skills and has a reduced ability to cope independently. (Valuing People definition.)

Least restrictive principles

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The Mental Capacity Act (2005) states that, when making a decision on behalf of someone that lacks mental capacity, any decision must consider if it is possible to decide or act in a way that would interfere less with the person’s rights and freedoms of action, or whether there is a need to decide or act at all.

Local Area Emergency Protocol

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Part of the NHS England Care and Treatment Programme the local area emergency protocol is used when someone living with a learning disability and/or autism and challenging behaviour is at risk of being admitted to a hospital assessment and treatment unit because of a crisis. An urgent meeting or teleconference will be held to try and help the person to continue to live in their communities with the right support and avoid them being admitted to a hospital assessment and treatment unit (ATU).

Local Authority

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A local authority (LA) is an organisation that is officially responsible for all the public services and facilities in a particular area. Their legal duties include the identification, assessment, education and support of disabled children and young people, proving a Local Offer (see below) and the assessment and support of all residents (including carers) who have eligible social care needs.

Local Offer

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The Local Offer is a list of services across education, health and social care for children and young adults aged 0 to 25. Each Local Authority is obliged to maintain the list on behalf of residents who have special educational needs or a disability and their families.

By providing all the information in one place the Local Offer will improve choice and transparency for families and also be an important resource for professionals.

Mental Capacity Act

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The Mental Capacity Act (MCA) is a law that protects and supports people who may have difficulty in making some of their own decisions. It ensures that they are given all necessary support to make every decision they are able to make, and to contribute towards any decisions made about their lives that they are unable to make themselves.

Mental Capacity Assessment

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Sometimes, as the result of a disability or illness, a person might find it difficult to make their own decisions and need some help. Using the Mental Capacity Act, anyone aged 16 and over can be assessed whether they have the mental capacity to make a particular decision. The person is deemed to lack capacity if they cannot do any of these four things.

  • Understand information given to them about a particular decision.
  • Retain that information long enough to be able to make the decision.
  • Weigh up the information available to make the decision.
  • Communicate their decision.

Mental Health Act

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The Mental Health Act (MHA) is the law that governs the assessment, treatment and rights of people with a mental health disorder who may be subject to compulsory detention and treatment. The law gives health professionals the powers, in certain circumstances and without consent, to detain, assess and treat people with mental disorders in the interests of their health and safety, or for public safety.

Multi-Disciplinary Team

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A Multi-Disciplinary Team (MDT) consists of a number of professionals from different specialties within health and social care, working together to meet the needs of patients with complex needs in their care.

NHS Health Check

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The NHS Health Check is available for anyone between 40 and 74 without a pre-existing condition. If you would like one, ask your GP Practice. These are designed to check for things like early signs of stroke, heart disease or type 2 diabetes and should happen once every 5 years.

Occupational therapy

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Occupational therapists work with adults and children of all ages with a wide range of conditions (most commonly those who have difficulties due to a mental health illness, physical or learning disabilities) to help them continue with life skills, work and leisure activities. They treat patients through specific activity to enable them to reach their maximum level of function and independence.

One-page profile

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A one-page profile is an aid to communication. It provides a one-page summary about a person: who they are, what is important to them and how they wish to be supported. This can help anyone supporting them to provide better person-centred support.

Patient Advice and Liaison Service

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Patient Advice Liaison Service (PALS) is an all age, confidential service providing advice, support and information to help patients, families and carers navigate NHS services. PALS staff will be happy to answer questions, hear compliments, comments, concerns or complaints about NHS services and can help to resolve problems by discussing the available options and offering further assistance if required.

Pen picture

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A pen picture is a concise summary of who a person is. Typically, it will include personal details, background, experience, skills and qualifications, interests, values and lifestyle. Depending upon the target audience, likes, dislikes, hobbies and interests can be added.

Person-centred planning

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Person-centred planning helps a person plan all aspects of their life. Putting the person at the heart of their care gives them the opportunity to take control of the things that are important to them and the outcomes that they want to achieve. It is an ongoing process requiring regular reviews to make allowances for any changes of need or priority.

Physical interventions

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The Challenging Behaviour Foundation defines physical interventions as ‘any method of responding to challenging behaviour which involves some degree of direct physical force to limit or restrict movement or mobility’ (Harris et al, 2008). See more here: https://www.challengingbehaviour.org.uk/understanding-behaviour/physical-interventions-sheet.html.

Pica is an eating disorder where someone has a compulsive desire to eat non-food items, which can of course be very harmful. If this behaviour persists, the cause will require further checks and investigation by a GP.  If you are concerned about the safety of someone who has eaten something that they are not supposed to, seek medical help immediately.

Positive Behaviour Support

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Positive Behaviour Support (PBS) is a person-centred and structured approach to supporting people with a learning disability and/or autism who display challenging behaviours. PBS focuses supporting positive behaviours and teaching new skills, rather than trying to contain the behaviours. Challenging behaviours are assessed to identify what they mean for the person, and then support is given to develop alternative skills to meet its purpose.

Positive Behaviour Support plan

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A Positive Behaviour Support (PBS) Plan is developed, following a functional behaviour assessment, to provide strategies to help understand and manage the challenging behaviour. This results in a better quality of life as the behaviour is not only understood, but also the person’s needs are better met without them having to resort to challenging behaviour.

Primary Care

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Primary health care is the first point of contact for most people in need of help and advice regarding health issues. The majority of primary care is provided by general practitioners (GPs), but specialists such as dentists, opticians and community pharmacists also provide primary health care. GPs are usually supported in the practice by a nurse, and may have access to other practice professionals such as a pharmacist or occupational therapist. 

Rapid Response Service

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The purpose of a Rapid Response Service is to provide urgent short term support or rehabilitation at home to avoid a person having to go into hospital. Local provision may vary, but referral will typically be via a GP or other health professional. It may also be available via 111 or a single point of access system, if available. Rapid Response teams consist of nurses, occupational therapists, physiotherapists, and health and care workers.

Reasonable adjustments

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If a person has a disability, care providers must make ‘reasonable adjustments’ to the way in which they provide their services to make sure that you are not disadvantaged and that services are accessible. This could include, for example, providing alterations to building access to cater for wheelchair users, accessible information, longer appointments or booking a person in at the start or end of the day to minimise waiting.

Referral

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Many of the more specialist health services are not available directly and a referral has to be made through a lead professional or a GP. This is so that the receiving team can check that they are the correct service and that you meet their criteria for support. On receipt of the referral, a member of the team will get in contact, complete an assessment of needs and then work out how best to help.

Requests for social care support, are also made by a needs assessment through your local authority to work out what help you need and whether you meet the eligibility criteria.

Respite Care

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Respite is a way for you to have a break from caring. This might involve someone coming in for a few hours a week, or your relative spending some time during the day or overnight somewhere nearby to give you a break. Respite could be available as the result of a carer’s assessment or as a part of your loved one’s Care Plan. 

Sensory processing difficulties

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Many people living with autism have difficulty processing everyday sensory information. Senses may be over- or under-sensitive. Sensory overload can be very distressing and result in withdrawal, challenging behaviour or meltdown.

Shared Lives

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Shared Lives is a scheme that links people who need help and support with approved families and carers who are willing and able to provide that help and support in their own home. People who use the service may have a learning disability, a physical disability, a mental health problem, or be unable to live independently because of their age. Shared Lives can be set up to provide day support, respite care, kinship, short-term or long-term care. To find your local scheme, look on your Local Authorities’ website.

Smearing

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Smearing faeces can occur for many reasons and causes can be medically related, sensory-related or behavioural. A functional assessment will be used to try and determine the cause. Strategies can then be developed provide alternative ways of meeting needs to avoid the person resorting to this behaviour.

Social imagination difficulties

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Social imagination difficulties affect people with autism, meaning it can be difficult for them to understand and interpret other people’s thoughts, feelings and actions, predict what will happen next or understand the concept of danger.

Speech and language therapy

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Speech and language therapy provides treatment, support and care for children and adults who have difficulties with communication, or with eating, drinking and swallowing. Therapy will be led by a speech and language therapist (SaLT).

Transition planning

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Preparing a person with an Education, Health and Care Plan (EHCP) for transition to adulthood starts in Year 9 (when a young person is 13 or 14 years’ old). An EHCP can continue to age 25 if they remain in education. The local authority must complete a transition assessment before the young person reaches the age of 18 if they are likely to need support from social care.  If the child has a primary health need, an NHS Continuing Health Care Assessment should be completed well before their 18th birthday, to allow enough time for the assessment to be completed.

Trichotillomania

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Hair-pulling disorder frequently connected with depressive and obsessive-compulsive disorders https://www.nhs.uk/conditions/trichotillomania/.

Wellness Action Plan

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A Wellness Action Plan is a document written by, with or for someone who needs help in their daily lives to stay well, physically and mentally. This will typically be used by someone with a mental health illness, and can also be of benefit for someone with a learning disability and/or autism who has behaviour that challenges those around them. This Plan enables a detailed record to be made of standard routines, early warning signs and triggers, coping strategies, support network details, and care and support needs/preferences during a crisis.

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