This page contains terms and definitions used in these guidelines.
This refers to the continuous or regular attention by an attendant care worker to perform such tasks as ventilator management or tracheal suctioning throughout the night. The attendant care worker must be awake throughout the night.
Active night care is definitely required on a permanent basis by people with a lesion at C1-C3 and an ASIA score of A. This requirement has been built into the guideline’s recommended total hours for attendant care.
At other levels of lesion, active night care may be required but only in exceptional circumstances. Such circumstances could include people suffering a temporary health crisis such as a severe chest infection or receiving treatment for major medical conditions such as cancer.
The American Spinal Injury Association (ASIA) Standard Neurological Classification of Spinal Cord Injury is a standard method of assessing the neurological status of a person who has sustained a spinal cord injury. ASIA scale assessments are usually carried out by specialist medical staff at the hospital the person is admitted to.
The ASIA impairment scale has five categories as follows:
A = Complete
No motor or sensory function is preserved in the sacral segments S4-S5
A = Complete
No motor or sensory function is preserved in the sacral segments S4-S5
B = Incomplete
Sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5
C = Incomplete
Motor function is preserved below the neurological level, and more than half of key muscles below the neurological level have a muscle grade of less than 3
D = Incomplete
Motor function is preserved below the neurological level, and at least half of the key muscles below the neurological level have a muscle grade of 3 or more
E = Normal
Motor and sensory function are normal.
Attendant care is a technical term that describes the support that a person with a spinal cord injury needs, in order to do tasks they would have been doing for themselves prior to their accident.
The legislation that ACC operates under (the Accident Compensation Act 2001) defines attendant care as:
- personal care (physical assistance to move around and to take care of basic personal needs such as bathing, dressing, feeding, and toileting)
- assistance with cognitive tasks of daily living such as communication, orientation, planning, and task completion
- protection of the person from further injury in his or her ordinary environment
- attendant care does not include child care, domestic activities, or home maintenance.
ACC distinguishes between two types of attendant care, according to the client’s level of medical and behavioural needs. Level 1 attendant care is what people with a spinal cord injury will typically require in most circumstances. Level 1 attendant care includes:
- assistance with undressing and dressing, transferring into and out of the bath or shower, washing and drying, hair washing and monitoring the condition of skin/scalp
- assistance with personal grooming activities, hair maintenance, teeth cleaning, cleaning & trimming finger/toe nails
- assistance with eating and drinking, observing and monitoring food intake, helping with sticking to special diets, preparing food, ensuring the person is positioned correctly and has access to any specialist utensils needed
- assistance with transfers to and from the toilet/commode and hygiene activities, assistance with the use of appliances and aids such as day/night urinary collection bags and associated hygiene
- transferring from bed to wheelchair and vice versa, ensuring safe mobility around the home including making sure aids such as walking sticks, frames and wheelchairs are maintained and safe
- physically assisting the person’s mobility inside and outside their home
- coaching in activities of daily living, in conveying and receiving information and interacting with other people
- developing personal skills such as planning, communication, task completion, and maintaining emotional control
- giving support to protect the person from further injury in their normal home environment.
Level 2 attendant care includes all of the above activities, but due to the injured person’s high medical or behavioural needs, the complexity of all of these tasks is greatly increased. The consequences of performing these tasks incorrectly are usually severe and prolonged for the injured person. Therefore, providing Level 2 attendant care requires a level of knowledge and skill that is equivalent to that possessed by a registered nurse.
Autonomic dysfunction (or dysautonomia) is a medical term which means the body’s regulatory system is not working. The body’s regulatory system is very complex and controls heart rate, blood pressure, temperature and the secretion of hormones and digestive enzymes.
Autonomic dysreflexia is a medical term that refers specifically to problems with a person’s blood pressure. It is very common amongst people with a spinal cord injury.
It refers to a condition where the person’s blood pressure spikes to dangerous levels, risking stroke or possibly death if untreated. It is usually triggered by something like a bladder infection, which people with spinal cord injuries are often unaware that they have. People with spinal cord injury at the T6 level or above are at greater risk.
A ‘complete lesion’ or complete spinal cord injury means there are no messages transmitted by the nerves at the level of injury. Clinically it means there is no movement and no sensation below the level of injury, and this type of condition is described as ASIA classification A.
An incomplete spinal cord injury means there is partial damage and some (or all) feeling and movement remains below the level of lesion. The amount lost will depend on how much damage is done to the spinal cord. Individual circumstances will need to be taken into account when assessing a person’s care needs. For example spasticity may severely reduce function and increase the support requirements. There are five main types of incomplete injury syndrome.
Central cord syndrome
People with central cord syndrome have their spinal cord damaged usually in the centre part of the spinal cord, and would usually experience more profound weakness and a lack of function in the upper limbs compared with the involvement of the lower limbs. They might have reasonably good chances of recovery and further improvement. Most people with central cord syndrome will have an ASIA scale classification of C or D.
Anterior cord syndrome
Anterior means ‘the front’. Damage to the front part of the spinal cord will usually result in partial or complete loss of movement as well as pain, temperature, and touch sensations below the level of injury. Some pressure sensation and position sense may be retained. Most people with anterior cord syndrome will have an ASIA scale classification of B.
Posterior cord syndrome
Posterior means “the back”. Damage to the back of the spinal cord may leave good muscle power, pain and temperature sensation, but create difficulties in movement coordination. This is very rare.
Where damage is mainly on one side of the cord. On the injured side, muscle power may be reduced or absent, and pressure and position sense are disordered. The other side experiences loss of, or reduced sensations of pain and temperature but movement, pressure and position sense tend to remain. Most people with Brown-Sequard syndrome will have an ASIA scale classification of C or D and are more likely to be in the D category, indicating good chances of recovery and improvement.
Cauda equina lesion
Cauda equina is the medical name for the “horses tail” of nerves that spread out from the base of the spinal cord. An injured cauda equina may result in patchy loss of power and sensation in the lower limbs. The bladder and bowel are usually severely affected. Functional recovery can happen over 12-18 months if the roots of the nerves are not permanently damaged.
Involves the supervision of children for the purpose of ensuring their welfare due to the absence or limitations of a parent, guardian or other suitable carer.
Includes social, recreational and other activities, and facilitation of community access through transport and mobility. Community access support is a need that is additional to attendant care, and hours should be allocated accordingly.
Includes those services (including resource preparation and planning) required to allow the individual to enter and remain at school or other educational facility.
A measure of disability, not impairment. The FIM measures what a person with a disability actually does, NOT what he or she ought to be able to do, or might be able to do if certain circumstances were different. It assesses the need for assistance, and the type and amount of assistance required for a person with a disability to perform basic life activities effectively.
A FIM score of 5 or less indicates there is a need for human assistance.
Some information sourced from Adult FIM Workshop Training Manual (ver. 5.0 AUS). This manual is currently being used for the training of ACC Assessors and Staff.
The functional assessment measure (FAM) is an expansion of the FIM, which allows for measurement of 12 additional items. The FAM has been designed to measure disability following injury, by assessing the patient’s level of independence in a number of daily activities.
A FAM score of 5 or less indicates a need for human assistance.
Some information sourced from The Centre for Outcome Measurement in Brain Injury (external link).
Refers to tasks that are involved in the everyday operation and maintenance of a household, including:
- meal preparation, cooking, dish washing, and kitchen cleaning
- laundry including washing, drying, folding and ironing
- household shopping
- vacuuming, dusting, cleaning bathroom and toilet, rubbish, and bed making
- minor repairs to clothing and linen.
Home nursing refers to specific clinical interventions that are required to be performed by a registered nurse in the home environment. The clinical interventions include:
- wound care
- medication management and intravenous therapy
- pain management
- educating the injured person and their family and carers about nutritional and hydration needs, including the use of special equipment
- monitoring a bowel care regime to make sure it conforms to best practice
- monitoring a bladder care regime to make sure it confirms to best practice
- implementing an incontinence management programme
- monitoring skin integrity and administering care to maintain or repair the injured person’s skin integrity
- implementing and monitoring an immobility management programme to prevent complications arising from immobility or restricted range of movement (such as contractures, muscle wasting or decreased bone density).
Level of injury or level of lesion
These are medical terms that all relate to where the damage to a person’s spinal cord has occurred. Spinal cord injuries are classified by the point at which the spinal cord is damaged.
This is sometimes called the ‘level of lesion’ or ‘level of injury’ and is usually referred to by the name of the vertebrae in the spinal column (see the diagram opposite).
Generally speaking, the level of injury and the degree of injury (determined by clinical syndromes and ASIA scales) are the most important determination as the basis for recommendations for these Guidelines.
Loss of motor function means a person has no voluntary control of their muscles.
Neurological level is usually described as the normal level immediately above the damaged level. By definition, the level of neurological lesion refers to the lowest segment of the spinal cord with normal sensory and motor function on both sides of the body.
Orthostatic hypotension is a medical term which describes a condition which results in a decrease in blood pressure, usually occurring in upright postures, especially on moving from lying down to upright sitting/standing/head-up tilt.
Paraplegia refers to spinal cord injuries that do not affect the upper limb functions. Medically it is determined at the level of T1 and below that level. People who have paraplegia have a partial or total paralysis of their legs and trunk but no abnormalities to the upper limbs including the arms and hands.
Tetraplegia is the term used to describe spinal cord injuries or lesions in the cervical region. People with tetraplegia have compromise of motor/sensory functions to their upper limbs as well as to the lower limbs. Quadriplegia describes the same condition and is the term more commonly used in North America.
Respite care is a term that refers to a flexible short-term break from the regular support routine for the individual or their family/carer (sometimes referred to as ‘relief care’ or ‘relief attendant care’). It can be provided at home or in a separate location.
These Guidelines do not have recommendations for hours of respite care as these are incorporated into the recommended hours for attendant care and domestic services. Separate funding of respite care would be unnecessarily complicated, involving a corresponding reduction in personal assistance and domestic services for the period of the short-term break.
Loss of sensory function means a person has no sense of touch and cannot feel hot or cold, pain, or pressure. They also have no sense of where in space their limbs are.
This refers to the occasional or intermittent attention by an attendant care worker to perform such tasks as turning someone or getting a drink during the night. The attendant care worker is permitted to sleep during the night but must be prepared for up to two wake-ups in an eight-hour period overnight, with each wake-up being for a maximum of 30 minutes.
Sleepover care to provide safety in the event of an emergency or pressure care and positioning can only be considered if these needs cannot be satisfied by other reliable means such as personal alarms, smoke alarms & sprinklers, and pressure-relieving mattresses.
In the past ACC has used the term supervision to describe attendant care that is indirect or ‘hands off’ as opposed to personal care. Supervision can be provided to:
- prompt the injured person to complete physical tasks (e.g. reminding them to have a drink of water)
- help with cognitive tasks
- protect the injured person from further injury.
These Guidelines do not have recommendations for hours of supervision as these are incorporated into the recommended hours for attendant care.
Includes those services required to assist the individual obtain and maintain paid employment.
Reviewed: 30 September 2016