The additional needs of people with Down syndrome
An individual who has Down syndrome and their family are supported by a team of professionals throughout their life. This team could include the family GP, paediatricians, midwives, health visitors, occupational and speech therapists and physiotherapists.
Additional healthcare needs
Childhood
Illnesses and disorders that are commonly seen in babies and young children are seen more often in children with Down syndrome. These illnesses are treated in the same way as other children but children with Down syndrome are more at risk of catching these illnesses.
Children who are born with Down syndrome will be in the care of a paediatrician from birth as they are familiar with the specific health risks associated with the condition.
Individuals with Down syndrome have a greater risk for:
- Congenital heart defects, which can be repaired by heart surgery during the first year or improve with time
- Intestinal obstructions, which require surgery shortly after birth
- Thyroid disorders and some other illnesses, most of which are easily treated
Because children are very vulnerable and are at more of a risk catching an illness they need extra care during infancy and throughout life.
Later life
Most individuals with Down syndrome are healthy and usually have similar healthcare needs to everyone else in their teenage years.
When it comes to middle and old age there are other factors that adults with Down syndrome are at risk of developing. This could be Dementia or Alzheimer’s disease. Because adults with Down syndrome are more at risk with these diseases it’s vital to get the right diagnosis and not just assume that the disease is present. It’s important to get the proper diagnosis because most individuals’ brains with Down syndrome show some abnormalities that are associated with dementia.
Sensory impairments
It’s important to recognise and treat a child who has sensory impairments as early as possible because it can affect the child’s developmental progress by making it slower than it could be. This can then affect the ability of the child to learn and make sense of their own world.
Hearing loss
Because individuals with Down syndrome are at risk of developing hearing loss as a child and as an adult it’s important to have regular hearing checks throughout their life to ensure everything is ok. If an individual does have a hearing impairment they may benefit from hearing aids, but will mostly be helped by adapting their environment for example reducing background noise or the use of sign language to support their speech.
Vision
Individuals with Down syndrome may also have vision impairments therefore it’s also important to have regular vision checks. Vision impairments in a person with Down syndrome can include cataracts and nystagmus which is a continuous rapid eye movement or wobble. They may also not be able to see sharp, clear images at different distances like a child without Down syndrome could. These defects can be corrected by surgery if necessary and by wearing glasses.
(http://www.down-syndrome.org/information/development/overview/?page=5)
Developmental factor
Autistic spectrum disorder which is also most commonly known as Autism affects over half a million people in the UK.
(http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=235&a=3432)
Understanding and diagnosing Autism can be very difficult because it is not a visible condition. It doesn’t affect the individual in a physical way like Cerebral palsy would; it is a condition that affects the way the individual communicates and relates to other people. They also have difficulty making sense of the world they live in.
An assessment for Autism is based on observations and practical tests rather than medical investigations.
The exact reason for Autism isn’t yet known but evidence shows that it’s linked to a variety of conditions affecting the brains development which can take place before, during and soon after birth. Like Down syndrome there is also no cure for the condition.
Individuals with Autism may have language, social and imagination impairments but they can also be very intellectual especially with numbers.
(Karen James – Class Handout 2009 – Meeting additional requirements for children’s care, learning and development)
The additional needs of people with Autism
Managing Autism may involve a mixture of behaviour management, education, speech pathology, medication and family support. Individuals with this condition need these supports because they have additional needs such as the triad of impairments:
- Language impairment
- Social impairment
- Impaired imagination
Language impairments
This includes:
- Poor understanding and use of facial expressions and body language
- Problem with meaning of words
- Problem with constructing their sentences
- Poor pragmatics – sense of audience
- Poor conversation skills
- Difficulty in understanding sarcasm, irony and metaphors
- Often copy what has just been said
- Some individuals with Autism are non-verbal and may never acquire speech
Social impairment
This includes:
- Difficulties associated with impaired language
- Withdrawal behaviours
- Difficulties understanding the mind of others
- Poor understanding of other people’s knowledge
- Difficulties predicting other people’s behaviour
- Difficulties in recognising and understanding feelings and emotions
- Lack of understanding of social conventions
- Poor attention span
Impaired imagination
This includes:
- Rigidity of thought and lack of imagination
- Ritualistic behaviours
- Reliance on routines
- Inability to cope with change
- Problems with generalisation
- Extreme delay or absence of pretend play
- Substituted repetitive behaviours or special interests
- Obsessions
- Attention difficulties
(Karen James – Class Handout 2009 – Meeting additional requirements for children’s care, learning and development)
Environmental factor
Bacterial meningitis affects about 2,000 cases each year in England and Wales and viral meningitis affects around 3,000. The number of cases has lowered over the years because of the vaccination programme that protects against many of the bacteria that can cause meningitis.
Meningitis and septicaemia are deadly diseases that can kill in hours. Meningitis is the inflammation of the lining around the brain and spinal cord and Septicaemia is the blood poisoning form of the disease.
The symptoms associated with this disease are:
- Sever headache
- Vomiting
- High fever
- Stiff neck
- Sensitivity to light
- Distinctive skin rash
(http://www.nhs.uk/conditions/Meningitis/Pages/Introduction.aspx)
The additional needs of people with meningitis
Unfortunately some babies and young children experience learning difficulties and behavioural problems following meningitis. These difficulties can usually sort themselves out.
Meningitis may cause additional needs because of the short-term effects it has such as:
- General tiredness
- Persistent headaches
- Clumsiness
- Giddiness
- Sore or stiff joints
Meningitis can also cause permanent damage such as:
- Memory problems or loss
- Concentration problems
- Hearing loss or deafness
- Damage in inner ear causing balance problems
- Partial loss of vision or blindness
- Severe brain damage
- Epilepsy
- Emotional difficulties
(Karen James – Class Handout 2009 – Meeting additional requirements for children’s care, learning and development)
Accident
An accident such as an injury to the head can cause many problems. These problems could be minor such as headaches and possibly stitches due to a cut. Major problems can cause additional needs because they may require more professional help. Major problems depend on which area of the brain is affected but it can include:
- Memory loss
- Difficulties with concentration
- Personality disorders
- Depression
- Difficulty with speech
- Difficulty with movement with a particular body part
- Paralysis
(Karen James – Class Handout 2009 – Meeting additional requirements for children’s care, learning and development)
Other
The additional needs of people with