The keys to life - Improving Quality of Life for People with Learning Disabilities
The new learning disability strategy in Scotland, following on from, and building on the principles and successes of The same as you?, the original review of service for people with a learning disability, published in 2000.
Glossary
Meaning of words
Advocate/Advocacy Someone who helps people with learning disabilities to say what it is they need and to make their own decisions. See citizen advocate and self-advocate.
Allied Health Professionals These are physiotherapy, occupational medicine (PAMs) therapy, chiropody, radiography, dietetics, remedial gymnastics, orthoptics, art, music and drama therapies.
Alternative and Augmentative Communication (AAC) AAC is any method of communication that supplements the ordinary methods of speech and handwriting, where these are impaired. AAC equipment can range from high tech dedicated computer equipment with specialist software to simple low tech picture communication books or mats.
Asperger's syndrome This is a type of autism (see below) that some people of average intelligence and language ability have. They find it particularly difficult to understand what other people think and this makes it hard for them to communicate and act appropriately.
Attention Deficit Hyperactivity Disorder (ADHD) ADHD is thought to be caused by a chemical imbalance in the brain that affects the parts controlling attention, concentration and impulsivity.
Autism This is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism can often have learning disabilities but everyone with the condition shares a difficulty in making sense of the world.
Autistic spectrum disorder Autism can happen in people with different degrees of learning disability as well as in people of average intelligence, for example, those who have Asperger's syndrome.
Because of this wide range, we talk about a spectrum of autistic disorder.
Behaviour analysis Looking into the cause and effect of behaviour based on what has happened in the past.
Benchmarking Working out how good a service is by comparing it to another service that has set a high standard.
Brokerage service Somewhere people with learning disabilities can go to get independent help in deciding on and buying the services they need.
Care at Home A form of health care service provided where a person lives.
Care Programme Approach A way of making sure that all those with serious mental health problems and complex needs have an assessment and care plan that all the different professionals agree on (for example, social workers and doctors). This is checked regularly to see how well the person is doing.
Challenging behaviour A term used to describe when someone is acting in a way that might do themselves or others harm. People who care for these people are 'challenged' to stop the harm.
Circles of support A group of people who care about change happening for the individual and choose to give their time and resources to working for a change.
Citizen advocate An 'unpaid' volunteer who is independent of the services, a person with learning disabilities receives. This advocate represents the needs of the person and supports them to make sure they get their rights.
Commissioning Deciding what services are needed and then getting someone to provide these by signing a contract.
Complex needs This describes the needs a person has over and above their learning disability. For example, extra physical or mental health problems, challenging behaviour or offending behaviour.
Continence management Trying to help people who have problems with bladder and bowel control.
Continuing care Nursing or medical help or both of a level that cannot be provided in a care or nursing home.
Co-occurring conditions Where a person may have two or more conditions i.e. may have autism as well as a learning disability.
Co-ordinated Support Plan (CSP) (was Record of Need) This is a legal document which aims to make sure that the additional support a child receives is properly co-ordinated. A CSP describes the child's strengths, their additional support needs, and their educational objectives. It will also describe the support the child needs to meet these objectives and the types of professionals who will provide the support.
Deafblind There is no accepted definition of deafblindness to which everyone subscribes. However, the most commonly used is the European one: Persons are regarded as Deafblind if they have a severe degree of combined visual and auditory impairment resulting in problems with communication, information and mobility. Deafblindness may also be referred to as dual sensory loss. There is no difference in the definition of Deafblind and dual sensory loss.
Detained patient Where someone is detained and treated on the ground of mental disorder under the Mental Health(Care and Treatment) (Scotland) Act 2003.
Diagnostic overshadowing Where an incorrect assumption is made that an individual's presentation or symptoms are due solely to their learning disability rather than a consideration of other attributable factors.
Direct payments Local authorities giving people money to buy their own social care services so that they have more say in how their needs are met.
Dementia Dementia is an umbrella term used to describe a range of brain diseases characterised by a progressive decline in intellectual and other mental functions. While Alzheimer's disease and vascular disease are the most common causes, there are a number of less common forms of dementia. Dementia is a terminal condition.
Early onset dementia A term used to describe people who get dementia at an earlier age than might be expected. This leads to a variety of problems, including difficulties in remembering, making decisions, and learning new skills. These difficulties get worse as time passes.
Demographics Demographics are the quantifiable statistics of a given population.
Foetal Alcohol Spectrum Disorder (FASD) This is an umbrella term which describes continuing permanent birth defects caused by maternal consumption of alcohol.
Forensic needs This relates to the support and services required by people who come into contact with the criminal justice system.
Guardian/guardianship A guardian for a child is someone appointed by a parent, or, where necessary, the sheriff, to take over parents' responsibilities and rights after a parent dies. The guardian's role applies until the child is 18. A guardian for an adult with a mental disorder is someone appointed by the sheriff who has the power to say where the person lives, gets education and training and also makes sure that doctors can see a person without difficulty.
Health and social care integration Where health and social care providers will work together to provide adult services.
Hearing impairment This covers any loss of hearing from mild hearing loss to profound deafness.
Invasive procedures This is procedure that is carried out by entering the body through the skin or body cavity.
Learning difficulty Pre-school and school-age children are usually described as having a learning difficulty rather than a disability when they have special educational needs that need extra or different approaches to the way they are taught.
Mainstream Generally available to all members of the community.
Managed clinical network Where healthcare professionals who have an interest in the same area of work share their knowledge and resources to get the best care for patients. A network can be local, regional or national depending on what the work is.
Mapping of services Finding out what services there are and what they are like.
Mobility Being able to move from one place to another with or without help.
Natural supports People who help those with learning disabilities like family and friends and are not paid to do this.
Out of area placements Where a person is placed out with their usual geographical area.
Palliative care Managing care for someone who is not going to get better. This is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering. (definition taken from Living and Dying Well)
Peripatetic support staff Staff who go from place to place to do their work rather than staying in a single centre.
Post school education The range of education that takes place after school leaving age. It may include further education, community education, higher education, adults going back to school, other kinds of informal education and vocational training.
Prevalence data A way of working out how many people in a population are likely to have a learning disability.
Psychotherapy A psychological treatment based on talking and usually designed to help the person understand what is happening now and how to change it.
Rectal diazepam This is a drug inserted up a person's bottom to stop severe epileptic fits.
Self-advocacy Where people with learning disabilities promote their needs and wishes for themselves.
Self-directed Support This describes the ways in which individuals and families can have informed choice about the way support is provided to them.
Sensory impairment This covers people with varying degrees of hearing loss, sight loss and also the loss of both senses. This loss can be present from birth or occur during the life time of a person.
Social inclusion Helping people to feel and be part of the society in which they live.
Transitions When a person moves from children's to adult services.
Visual impairment This covers any loss of vision that cannot be corrected by wearing glasses or contact lenses. Conditions that can cause a visual impairment include, but not only, cataracts, glaucoma, macular degeneration and diabetes-related eye conditions.
Signposting
Action on Hearing Loss Scotland represents the 850,000 people who are deaf or have a hearing loss in Scotland.
http://www.actiononhearingloss.org.uk/
Association of Directors of Social Work (ADSW) The professional association of senior social work managers in Scotland.
Association of Local Authority Chief Housing Officers aim to shape, inform national policy and guidance and legislation to the benefit of local authorities in particular strategic housing policy.
Camphill Scotland One of the largest support networks for children, young people and adults with learning disabilities, mental health problems and other support needs.
http://www.camphillscotland.org.uk/
C-Change Scotland provides individually tailored support for people to make choices about where they live and who they live with.
Citizens' Advice Scotland The national umbrella body that provides support services for the Scottish citizens bureaux and collates client case evidence to shape policy in Scotland.
Cornerstone cares and supports over 1700 people each year through a wide range of services.
http://www.cornerstone.org.uk/
Convention of Scottish Local Authorities (COSLA) The representative voice of Scottish local government.
Dates and Mates Scotland's national dating and friendship agency run by and for people with learning disabilities.
http://www.dates-n-mates.co.uk/
Deafblind Scotland aims to help Deafblind people in Scotland live as rightful members of their own communities, where they have the permanent support and recognition necessary to be equal citizens.
http://www.deafblindscotland.org.uk/
ELCAP provides housing support and care at home services for people with a learning disability; physical or sensory impairment; mental health issues; drug and alcohol misuse problems; older people and people with acquired brain injury.
ENABLE Scotland support people with learning disabilities and their families to live, work and take part in their communities.
Equal Futures Led by families who have taken the initiative to plan and support their relative who has a disability to enjoy a good life.
http://www.equalfutures.org.uk/
Heartfelt is a training and consultancy organisation based in Scotland but working through UK. Most of the people who work for Heartfelt are people who have experience of using social work or social care services or care for someone who does.
Housing Options Scotland Helping disabled people to find the right housing in the right place.
http://www.housingoptionsscotland.org.uk/
Indepen-dance An inclusive dance development company offering creative movement classes to people with diverse abilities, their carers, family members and volunteers.
Institute of Public Care committed to improving the quality and performance of services across health and social care, education, housing and welfare.
Interest Link Borders run befriending services that link people with learning disabilities and volunteers so they can meet up and do activities they both enjoy.
http://www.interestlink.org.uk/
Kingdom Abuse Survivors Project (KASP) aims to enable adult survivors of childhood sexual abuse to eliminate the debilitating effects that the abuse has on their lives.
Link Housing Association One of Scotland's leading housing, regeneration and support organisations.
PAMIS The only organisation working with people with profound and multiple learning disabilities and their families in Scotland.
People First Scotland Works to support people with learning disabilities to have more choice and control over their lives.
http://www.peoplefirstscotland.org/
RNIB Scotland Leading charity working with blind and partially sighted people in Scotland, supporting children and adults with sight loss to live full and independent lives.
Scottish Consortium for Learning Disability (SCLD) A consortium of partner organisations who work together to encourage best practice in the support of people with learning disabilities through training, information, consultancy, research and public education.
Scottish Human Rights Commission (SHRC) promotes and protects the human rights of everyone in Scotland and is dedicated to helping everyone understand their rights and shared responsibilities they have to each other and their community.
http://www.scottishhumanrights.com/
Scottish Independent Advocacy Alliance (SIAA) promotes, supports and defends the principles and practice of Independent Advocacy across Scotland.
Scottish Learning Disability Observatory University of Glasgow have been funded by the Scottish Government to create a Scottish Learning Disability Observatory which will be dedicated to underpinning health improvement and to addressing health inequalities.
Self-directed Support Scotland The Scottish Government's Self-directed support website - a one-stop shop for information on Self-directed Support in Scotland.
http://www.selfdirectedsupportscotland.org.uk/
Share Scotland provides practical, emotional and physical support to people with learning and physical disabilities.
http://www.sharescotland.org.uk/
SurvivorScotland Developed by the Scottish Government aims to raise awareness of childhood abuse and its long-term consequences, improve services and enhance the health and well-being of survivors.
Contact
Email: Julie Crawford
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