Glossary

BY: Emma Russell

CATEGORY: Blog

We have put together a glossary of key terms and phrases used in the disability world. This is to help you to better understand support and information you are given and to enable you to better navigate the world of learning disability and the wording and jargon that is used.

Autism

Autism is a lifelong developmental disability which affects how people communicate and interact with the world. People with autism are all different. Autism includes a wide spectrum of conditions.

There are some common traits that people who have autism often share though. Autistic people often have difficulty communicating and interacting with others. Many people also engage in repetitive behaviours. It’s also common for people with autism to have sensory issues, being either under sensitive or oversensitive to taste, smells, lights, colours, temperature, or pain.

Some people with autism have average or above average intelligence, while other people with autism have a learning disability.

Find out more about autism spectrum condition:
National Autistic Society
Ambitious About Autism

 

Complex needs

People with learning disabilities sometimes have more than one condition. These co-exist and overlap, and people often require extra support because of this.

Someone can have complex needs for many different reasons: because of learning disabilities, physical disabilities, autism, mental health, brain injury or dementia. Often, this is combined with physical health needs, such as epilepsy or sensory issues. People with complex needs are often at greater risk from illness and need special support to manage their health conditions. When someone’s needs aren’t being understood, people with complex needs might display behaviours that challenge – for example, self-harming or breaking things. This can be a way of communicating feelings and emotions when someone is not able to express them in another way.

 

 

Care Quality Commission (CQC)

The Care Quality Commission is a semi-independent organisation which is commissioned by the government to regulate the health and social care sector, making sure that hospitals, care homes and other social care providers follow certain standards. The CQC inspects health and social care services, including LDN London, and report what they find, giving performance ratings, which helps people make decisions about their care.

The CQC has the power to take action to improve or, if necessary, close care services.  You can read about LDN London’s latest inspections here: https://www.cqc.org.uk/provider/1-101647909.

Visit the CQC website.

 

Down’s Syndrome


Down’s syndrome is when you’re born with an extra chromosome. This usually happens by chance, because of a change in the sperm or egg before someone is born.

People who have Down’s syndrome will have some level of learning disability. Some people will be more independent and do things like get a job, while other people might need more regular care.

Find out more about Down’s Syndrome:
Down’s Syndrome Association 
Down Syndrome International

 

Dysphagia

Dysphagia is the medical term for problems with swallowing. People with learning disabilities are more likely to have dysphagia than the general population. It poses a big health risk and can cause death from choking. It can also cause pneumonia due to people breathing in food or drink.

People with concerns about dysphagia get support from speech and language therapists from their local authority.

Find out more: https://www.gov.uk/government/publications/dysphagia-and-people-with-learning-disabilities/dysphagia-in-people-with-learning-difficulties-reasonable-adjustments-guidance

Domiciliary care 

Domiciliary Care is where people with learning disabilities get support with personal care at home. Personal care includes help with personal hygiene, using the toilet, as well as other personal tasks such as doing the laundry or cleaning. This means someone can keep their independence and quality of life, without leaving the place where they often feel the most safe and comfortable – their own home. We provide support from a few hours a week, to much more regular hours, including daily visits.


Education Health and Care Plan (EHCP)

An Education Health and Care Plan details the needs of a child with a learning disability (or other disability) and a strategy for supporting them.  It is a legal document, written for a young person with special educational needs or disabilities (of up to the age of 25), who requires extra help from their school or who goes to a special school. The plan doesn’t just outline ways to support someone in their education though. It also includes a strategy for other areas of a child or young adult’s life: employment, home life, independence, friends and relationships, and health and wellbeing.

A young person’s family, together with their school, can request an EHCP from their local authority. An EHCP is organised by the local authority and involves a needs assessment and collaboration with the young person and their family, along with relevant healthcare and educational professionals.

Click this link to contact one of our family support workers for more information.

Learning difficulty

A person with a learning difficulty finds it difficult to understand certain forms of information. A learning difficulty is different to a learning disability as it doesn’t affect someone’s general intelligence (IQ). People can have different kinds of learning difficulty, which affect people to different degrees, from mild to severe. You can also have more than one learning difficulty.

Examples of learning difficulties include dyslexia (difficulty with reading, writing and spelling) and dyscalculia (a specific difficulty understanding numbers).

 

Learning disability

A learning disability is a reduced ability to understand new and complex information and a difficulty with everyday activities – for example household tasks, socialising or managing money – which lasts for life. A learning disability begins before adulthood.

Learning disabilities are different for each person. Someone may have a mild, moderate, severe, or profound learning disability. If you have a mild learning disability you may be quite independent and only need help with relatively complicated tasks, such as applying for jobs or filling out forms. On the other hand, people with severe or profound learning disabilities often need 24-hour care and support.

Every person with a learning disability is unique. People with many health conditions, including Williams Syndrome, Fragile X, Down’s Syndrome and others, have learning disabilities.

Learning Disability Network London supports people who have a wide range of learning disabilities.

Find out more information about learning disabilities:

Read our blog post: What is a learning disability

Mencap

OFSTED

Ofsted is a government body which inspects schools in England, as well as adoption and fostering agencies. It also regulates a range of early years and children’s social care services.

Visit OFSTED’s website.


Outreach support / Floating support

Through outreach we visit people with learning disabilities in the community to give help and support.  Some people live independently but need support with day-to-day activities. This could include tidying, managing money, attending appointments, and going to college.

Our outreach team supports people with a range of learning disabilities and needs, helping people to do the things they love, from taking trips, to doing exercise or going to the theatre. We encourage people to take on opportunities, from volunteering, to finding a job or to go out and get more involved in events in their community.

Portage

Portage is a home-visiting educational service for pre-school children who have special educational needs and disabilities, and their families.

It involves supporting young children and families to help them improve their quality of life, to learn and play together, and participate and be included in their community.

Three key parts of portage are:

 

Registered care

Registered Care refers to a service where the accommodation and support are registered with the Care Quality Commission (CQC). Typically, this is a shared living service, where people have a license for a room and the support that they receive is linked to where they live. This means people don’t have to pay for their bills and for the cost of living, as it is covered as part of their support package.

A team provides support for people in their daily lives, which includes domestic tasks, activities, and around people’s general health and wellbeing. A local authority or health board usually pays for registered care. Registered care services in England, as well as being registered with the CQC, are also regulated and inspected by them.

LDN has three registered care services, where we support 13 people in total.

Click to find out more about our registered care services.

 

Respite services / Short breaks 

Respite services or short breaks mean that people with learning disabilities who live with their families can stay somewhere else for a short period of time.

This gives carers and other family members a break from their caring role. This is important as caring can be exhausting and challenging. A break to recharge your batteries, rest and focus on other things for a while is vital.

A short break in dedicated accommodation, such as Alison House, can also be beneficial for people with learning disabilities. It is often a welcome change to someone’s routine, as well as an opportunity for a holiday, to take trips, do activities, learn new things and meet new people.

At LDN London we have planned and unplanned respite services. Unplanned services are for people who need accommodation in an emergency.

These services are also registered with the Care Quality Commission.

Click to find out more about our short breaks options.

 

SEND – Special Educational Needs and Disabilities 

A child or young person has special educational needs and disabilities if they have a learning difficulty or disability that means they need extra health and education support, beyond what is usually given in schools. This could be because they find learning a lot more difficult than most children and young people of the same age, or because they have a disability which means they cannot attend ‘mainstream’ schools.

Supported living

Supported living is where people with learning disabilities receive support in their own home or a shared house. People using supported living have their own tenancies and pay their own bills. (LDN London, and other organisations, can support people with this). The Government often helps people to pay their rent and bills through benefits.

Supported living gives people independence in their home, as well as the benefit of some extra help. It means a person has more choice and the responsibility for looking after their property, paying rent, and (often) buying furniture. The support a social care provider gives in supported living is not connected to someone’s home or the tenancy. When supporting a person, it is vital to respect that you are in their home and treat it as you would anyone else’s home (respecting it and keeping appropriate boundaries).

Through supported living we help people to live with more independence. People with different learning disabilities use supported living. Some people require 24-hour one-to-one support, while others need a couple of hours of extra help each day. Sometimes we provide personal care in supported living services. When this is the case, the service is registered with the Care Quality Commission.

Click to find out more about our supported living services.

 

Support worker

A support worker looks after people who are at-risk or have a health condition, and helps them to live life to the fullest.

Support workers help with day-to-day activities, so the people they support can manage their lives, learn new things, or do what they enjoy.  A support worker also helps people to be independent and to have as much choice as possible. Tasks support workers do in their job might include helping people to set goals and achieve them, supporting people with everyday plans (such as going to college or doing activities), providing support with personal care and hygiene, and assisting people with their communication skills.


Click this link to read our blog post and find out more about the role of a support worker at LDN London.

 

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