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Disability Matters

The Paediatric Department at the Royal Berkshire Hospital reports five leading types of disability.

Click on the icons below to read more about them.

Children with such conditions have high support needs as a result of severe or profound learning impairments and associated physical and sensory impairments.

Autistic Spectrum Disorder (ASD)

What is ASD?

Autism Spectrum Disorder (ASD) is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.
Around 700,000 people in the UK have autism. Together with their families they make up around 2.8 million people whose lives are touched by autism every single day.
It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.
Asperger syndrome is a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language.

Signs of Autism

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ASD Resource

INSAAN recommends you visit this site below:
CLICK HERE TO READ THE RESOURCE

This website explains autism in away that can be understood by all. Many themes are covered including causes, diagnosis, research and facts and figures about ASD. For those whose first language is not English, the website also provides information in many different languages, including Punjabi, Urdu, Bengali, Arabic, Mirpuri, Tamil and Hindi.

Cerebral Palsy (CP)

What is Cerebral Palsy or CP?

Cerebral palsy is a condition that affects muscle control and movement. It is usually caused by an injury to the brain before, during or after birth. Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop.

Is there a cure for Cerebral Palsy?

There is no cure for cerebral palsy, but physiotherapy and other therapies can often help people with cerebral palsy become more independent.

No two people will be affected by their cerebral palsy in the same way, and it is important to ensure treatments and therapies are tailored to your child’s individual needs.

How common is Cerebral Palsy?

In the UK, cerebral palsy affects about one in every 400 children. Cerebral palsy can affect people from all social backgrounds and ethnic groups.

What causes Cerebral Palsy?

There may be no obvious single reason why a child has cerebral palsy. The main causes of cerebral palsy include:

  • Infection in the early part of pregnancy
  • Lack of oxygen to the brain
  • Abnormal brain development
  • A genetic link (though this is quite rare)

What can increase the chances of Cerebral Palsy?

The following factors can increase the likelihood of cerebral palsy:

  • Difficult or premature birth
  • Twins or multiple birth
  • Mother’s age being below 20 or over 40
  • Father under 20 years
  • First child or fifth (or more) child
  • Baby of low birth weight (less than 2.5 pounds)
  • Premature birth (less than 37 weeks)
  • A combination of the above (such as low birth weight and being a twin) can further increase the probability of cerebral palsy.

Types of Cerebral Palsy

There are three main types of cerebral palsy. Many people with cerebral palsy will have a mixture of these types.

  • Spastic cerebral palsy
  • Dyskinetic cerebral palsy
  • Ataxic cerebral palsy

No two people with cerebral palsy are affected in the same way. Some have cerebral palsy so mildly that it’s barely noticeable. Others may be profoundly affected and require help with many or all aspects of daily life.

Cerebral Palsy: Associated Conditions

Some people with cerebral palsy may have associated conditions; while others may not. These can include:

  • Learning difficulty (although children with cerebral palsy cover the same range of intelligence as other children)
  • Epilepsy (up to a third of children with cerebral palsy)
  • Hearing impairment (only 8% of children)
  • Problems with sleep
  • Communication difficulties
  • Feeding difficulties
  • Drooling
  • Problems with toileting
  • Behaviour issues (one in four children with cerebral palsy)
  • Periventricular leukomalacia

Does Cerebral Palsy change?

Cerebral palsy itself is not progressive; the injury to the brain does not change. However, the effects may change over time for better or worse.
Read more about CP and ageing.

Cerebral Palsy resource

INSAAN recommends you visit the following website:
SCOPE Article on CP

SCOPE, formerly ‘The Spastic Society’, has a long and well-established history of providing information and services in the area of cerebral palsy.

Down’s Syndrome

Down’s Syndrome

Down’s syndrome, also known as Down syndrome, is a genetic condition that typically causes some level of learning disability and a characteristic range of physical features.

Most babies born with Down’s syndrome are diagnosed with the condition after birth and are likely to have:

  • reduced muscle tone leading to floppiness (hypotonia)
  • eyes that slant upwards and outwards
  • their palm may have only one crease across it (palmar crease)
  • a below average weight and length at birth

Although children with Down’s syndrome share some common physical characteristics, they do not all look the same. A child with Down’s syndrome will look more like their mother, father or other family members than other children with the syndrome.

People with Down’s syndrome also vary in personality and ability. Everyone born with Down’s syndrome will have a degree of learning disability. The level of learning disability will be different for each individual.
Read more about the characteristics of Down’s syndrome.

Screening for Down’s syndrome

In some cases, babies with the condition are identified before birth as a result of antenatal screening for Down’s syndrome. If screening indicates there is a chance your baby has Down’s syndrome, further testing is available to determine how likely it is.
Screening tests don’t tell you for definite if your baby has Down’s syndrome, but they can tell you how likely it is. The only way to get a definite diagnosis is for a chromosome test to be done using a sample of the baby’s blood.
Read more information about how Down’s syndrome is diagnosed.

Who is affected?

Down’s syndrome is one of the most common genetic causes of learning disability. Around 750 babies are born with the condition each year in the UK. Down’s syndrome affects people of all races, religions and economic backgrounds equally.

The condition is caused by the presence of an extra copy of chromosome 21 in a baby’s cells. It occurs by chance at conception and is irreversible. As yet, no one knows what causes the presence of the extra chromosome 21.

Although the chance of having a baby with Down’s syndrome increases with age, babies with the syndrome are born to mothers of all ages. There is no evidence that anything done before or during pregnancy causes the syndrome.

Living with Down’s Syndrome

Some families find it difficult to accept a diagnosis of Down’s syndrome and it is not uncommon for parents to experience negative thoughts after the birth of their new baby.

As with most new parents, a relationship begins to develop as their baby becomes more responsive and engaging. It is important to remember that a baby with Down’s syndrome has the same needs as any baby. Books, magazines and support from family and friends are just as relevant.
Although there is no “cure” for Down’s syndrome, there are ways to help children with the condition develop into healthy and fulfilled individuals who are able to achieve a level of independence right for them. This includes:

  • access to good healthcare, including a range of different specialists
  • early intervention programmes to provide support for children and parents
  • good parenting skills and an ordinary family life
  • education and support groups to provide information and help for parents, friends and families

Improved education and support has presented more opportunities to people with Down’s syndrome. These include the option to leave home, form new relationships, gain employment and lead independent lives.

However, it is important to remember that each child is different and it is not possible to predict how individuals will develop.

Complications

Many children with Down’s syndrome have associated health conditions. Possible complications include:

  • heart disorders
  • bowel abnormalities
  • digestive problems
  • hearing and vision impairments
  • thyroid dysfunctions
  • infections
  • cervical spine dislocation
  • blood disorders

These conditions vary in severity with each individual. Some children experience none of them, while others experience several.

Your child may be checked by a paediatrician more often than other children to pick up developing problems as early as possible.

If you have any concerns about your child’s health, discuss them with your GP, health visitor or paediatrician.

Down’s Syndrome Resource

INSAAN recommends you visit: Down Syndrome Organisation

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Epilepsy

What is Epilepsy?

Epilepsy is a condition that affects the brain and causes repeated seizures, also known as fits.

Epilepsy affects more than 500,000 people in the UK. This means almost 1 in 100 people has the condition. Epilepsy usually begins during childhood, although it can start at any age.

Seizures

Seizures are the most common symptom of epilepsy, although many people can have a seizure during their lifetime without developing epilepsy.

The cells in the brain, known as neurones, communicate with each other using electrical impulses. During a seizure, the electrical impulses are disrupted, which can cause the brain and body to behave strangely.
The severity of the seizures can differ from person to person. Some people simply experience a ‘trance-like’ state for a few seconds or minutes, while others lose consciousness and have convulsions (uncontrollable shaking of the body).

Why does Epilepsy happen?

Epilepsy can happen for many different reasons, although usually it is the result of some kind of brain damage.

Epilepsy can be defined as being one of three types, depending on what caused the condition. These are:

  • Symptomatic epilepsy – when the symptoms of epilepsy are due to damage or disruption to the brain.
  • Cryptogenic epilepsy – when no evidence of damage to the brain can be found, but other symptoms, such as learning difficulties, suggest that damage to the brain has occurred.
  • Idiopathic epilepsy – when no obvious cause for epilepsy can be found.

Diagnosing Epilepsy

Epilepsy is most often diagnosed after you have had more than one seizure. This is because many people have a one-off epileptic seizure during their lifetime.

The most important information needed by a GP or neurologist is a description of your seizures. This is how most cases of epilepsy are diagnosed.
Some scans may also be used to help determine which areas of your brain are affected by epilepsy, but these alone cannot be used for a diagnosis.

How is Epilepsy treated?

While medication cannot cure epilepsy, it is often used to control seizures.

These medicines are known as anti-epileptic drugs (AEDs). In around 70% of cases, seizures are successfully controlled by AEDS.
It can take some time to find the right type and correct dose of AED before your seizures can be controlled.
In some cases, surgery may be used to remove the area of the brain affected or to install an electrical device that can help control seizures.

Living with Epilepsy

While epilepsy is different for everyone, there are some general rules that can help making living with the condition easier.

  1. It is important to stay healthy through regular exercise, a balanced diet and avoiding excessive drinking.
  2. You may have to think about your epilepsy before you undertake things such as driving, using contraception and getting pregnant.
  3. Advice is available from your GP or support groups to help you adjust to life with epilepsy.

Sudden Unexpected Death in Epilepsy (SUDEP), while rare, is one of the main dangers associated with epilepsy. Every year between 500 and 1,000 people die as a result of SUDEP, this is less than 1% of people with epilepsy.
Although the cause of SUDEP is unknown, a clear understanding of your epilepsy and good management of your seizures can reduce the risk.

Epilepsy Resources

INSAAN recommends you visit the following excellent websites for more information on epilepsy:
Epilepsy Action
Epilepsy Society – What is Epilepsy
Brain and Spine Foundation on Epilepsy
About SUDEP

Audio/Visual (AV) Impairment

Hearing impairment or deafness

Estimates suggest that more than 10 million (about one in six people) in the UK have some degree of hearing impairment or deafness.

Support in School

Take a look at Learning Together: the hearing impaired child, which includes support for disabled children in mainstream education.

Associated Conditions

Some people with hearing impairment may have associated conditions, while others may not. These can include:

  • Learning disability
  • Cerebral palsy (only 8% of children have a hearing impairment)
  • Problems with sleep
  • Communication difficulties
  • Behaviour issues

Audio-Visual Resources

INSAAN recommends you visit the following websites for organizations that specialize in hearing impairment:

        • Deaf Sign
          • Resource for issues related to deafness and sign language.
        • Deafax Trust
          • New technologies for deaf people to improve literacy skills and self-confidence.
        • DeafPlus
          • Advice, support and guidance for deaf and visually impaired people.
        • HearFirst
          • Disability and deaf awareness training.

Visual impairment or Blindness

Visual impairment is when a person has sight loss that cannot be fully corrected using glasses or contact lenses.

It’s estimated that as many as two million people in the UK may be living with this sort of sight problem. Of these, around 365,000 are registered as blind or partially sighted.

It’s important to visit an optometrist (optician) for an eye test at least every two years so they can check for signs of vision loss.
If you already have visual impairment, it is still important to have a regular eye test, as your optometrist can monitor for further changes in the eyes and advise on making best use of your vision.

How vision is tested and measured

There are two main areas that are assessed when your vision is tested:

  • visual acuity – central vision used to look at objects in detail, such as reading a book or watching television
  • visual field – ability to see around the edge of your vision while looking straight ahead

The main tests used to assess your visual acuity and field are described below.

Visual acuity testing

A test called the Snellen test is often used to measure your visual acuity. It involves reading letters off a chart on which the letters become progressively smaller. This chart is used during a routine eye test.
After the test you are given a score for your visual acuity. A Snellen score consists of two numbers. The first number represents how far away from the chart you were able to successfully read the letters on the chart. The second number represents how far away a person with healthy vision should be able to read the chart.
So if you were given a visual acuity score of 6/60, it means you can only read at 6 metres away what a person with healthy eyesight can read at 60 metres away.

Visual field testing

There are a number of different tests that can be used to assess your visual field.
One test involves looking straight ahead at a device while lights are flashed on and off at the edges of your vision. You will be asked to press a button every time you see a light. This shows any gaps in your field of vision.
Alternatively, you may be asked to follow an object (or the tester’s hand) with your eyes as it is moved across your field of vision. You will be asked to say when you first see the object and when you can no longer see it.

Types of visual impairment

Visual impairment is usually classified as either ’sight impaired’ or ‘severely sight impaired’. These classifications are based on the results of the tests described above.

Sight impaired

Sight impairment, previously called ‘partial sight’, is usually defined as:

  • having poor visual acuity (3/60 to 6/60) but having a full field of vision, or
  • having a combination of slightly reduced visual acuity (up to 6/24) and a reduced field of vision or having blurriness or cloudiness in your central vision, or
  • having relatively good visual acuity (up to 6/18) but a significantly reduced field of vision
Severely sight impaired

The legal definition of severe sight impairment (which was previously called ‘blindness’) is when ‘a person is so blind that they cannot do any work for which eyesight is essential.’
This usually falls into one of three categories:

  • having very poor visual acuity (less than 3/60), but having a full field of vision
  • having poor visual acuity (between 3/60 and 6/60) and a severe reduction in your field of vision
  • having slightly reduced visual acuity (6/60 or better) and a significantly reduced field of vision

Causes of visual impairment

Most causes of visual impairment in the UK are conditions that develop as you get older. About 8 in every 10 people with visual impairment are over 65.

However, losing your vision is not an inevitable part of ageing. It is often the result of a condition that can either be treated or sometimes even prevented. This is why it’s so important to have regular check-ups with your optometrist.

Some of the most common causes of visual impairment include:

  • age-related macular degeneration (AMD) – where the central part of the back of the eye (the macula, which plays an important role in central vision) stops working properly
  • cataracts – where cloudy patches can form within the lenses of the eyes
  • glaucoma – where fluid builds up inside the eye, damaging the optic nerve (which relays information from the eye to the brain)
  • diabetic retinopathy – where blood vessels that supply the eye become damaged from a build-up of glucose

In some of these cases, such as cataracts, treatment can at least partially restore your vision.

Vision loss caused by AMD, glaucoma and diabetic retinopathy cannot usually be reversed. However, there are several treatments that can prevent further damage to vision, or at least slow down the progression of these conditions.

Getting help and support

There are support services, charities and devices that can all help make life easier if your vision is impaired.

Just because you have low vision, it does not mean you are no longer able to work or live independently.
With the help of assistive technology, training and support, many people who are either partially sighted or blind can continue to live full lives and work in demanding roles.

Registering as visually impaired

If you are visually impaired, it is important to register this with your local authority. This is not compulsory, but it can entitle you to a range of benefits, such as:

  • Disability Living Allowance (DLA) or Personal Independence Payment (PIP) – a tax-free benefit to help with any costs a person has relating to their disability or illness
  • a reduction in the TV licence fee
  • a tax allowance
  • reduced fees on public transport
  • parking concessions

To register, your visual acuity and visual field will have to be tested by an ophthalmologist (a doctor who specialises in diagnosing and treating eye conditions).

If the results show you are sight impaired or severely sight impaired, you will be issued with what is known as a Certificate of Visual Impairment (CVI) and a copy will also be sent to your local social services who can offer practical support.

Speak to your optometrist, GP or ophthalmologist for more information on registration. You can also read more about registering vision impairment on the Gov.uk website.

Visual Impairment Resources

INSAAN recommends you visit the following websites for more info on visual impairment:

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Please note that the above information has not been written by INSAAN and has been compiled from various sources outlined in the links.

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