Download Attendant Care and Disability Support: A Look at the Accident Compensation Act 2001 and more Study notes Nursing in PDF only on Docsity!
Spinal cord injury guidelines
These guidelines have been developed for assessors, rehabilitation service providers and ACC staff, who work with clients who have a significant impairment due to a traumatic injury to the spinal cord.
Guidelines introduction
The Guidelines aim to increase assessors’ and rehabilitation service providers’ understanding of the typical range of supports needed by people with different levels of spinal cord injury.
Assessors can cross-reference their advice about levels of attendant care, against the typical range of responses for people with the same level of injury recommended in these Guidelines. This process will also help assessors justify any levels of proposed attendant care that are above or below the levels recommended in the Guidelines.
The Guidelines will help ACC staff and their clients make objective and consistent decisions about the supports needed to enable clients to participate in everyday life - particularly regarding the level of attendant care needed.
We suggest ACC staff also use the Guidelines to review assessors’ advice and to make decisions about the amount of attendant care that will be funded by ACC.
The recommendations made in these Guidelines refer to the total number of hours of attendant care required by the person with that level of injury, regardless of who provides the care. The recommendations are based on:
the level of injury to the person’s spinal cord an assessment of the person’s upper extremity motor function and related motor scores using the American Spinal Injury Association (ASIA) Standard Neurological Classification of Spinal Cord Injury an assessment of the person’s ability to walk.
These Guidelines do not apply to:
a child (under 14 years of age) with a spinal cord injury a person whose spinal cord damage has been caused by illness or a congenital condition a person who has either a pre-existing disability such as epilepsy, or other co-existing impairments such as a severe brain injury (sometimes referred to as ‘dual diagnosis’ when detected together) - these make management of their spinal cord injury much more complex a person living in institutional or residential care (eg a nursing home).
Disclaimer
These Guidelines do not intend to set a minimum or maximum standard of care, nor do they make recommendations about providers of support services.
The amount of support recommended in these Guidelines is for a ‘typical’ person with a spinal cord injury who lives independently (alone or with others) in the community in an appropriately modified environment.
When assessing a person’s support needs, individual circumstances will always need to be taken into account. There are a range of factors that can put a person outside the range typically required by people with the same level of injury.
An individual’s amount of support may fluctuate. In most cases the change is not permanent and the support can return to the ‘typical’ range indicated in these Guidelines. Any request for a change in the amount of support will be considered by ACC staff, who may ask for a re-assessment if it appears there has been a change in need.
- Guidelines introduction
- Disclaimer............................................................................................................................................
- Background to the ACC Spinal injury guidelines
- Adapting the Guidelines for New Zealand conditions
- Acknowledgements.............................................................................................................................
- Workshop 1 members.....................................................................................................................
- Workshop 2 members.....................................................................................................................
- Workshop 3 members.....................................................................................................................
- Structure of these guidelines
- Assessor instructions for using these guidelines
- ACC staff instructions for using these guidelines................................................................................
- Assessor advice for hours within guidelines
- Assessor advice for hours outside guidelines
- Definitions - Active nights - ASIA impairment scale - Attendant care - Autonomic dysfunction - Autonomic dysreflexia - Complete versus Incomplete spinal cord injury - Central cord syndrome - Anterior cord syndrome - Posterior cord syndrome - Brown-Sequard syndrome - Cauda equina lesion - Child-care services - Community access - Educational support - Functional Independence Measure (FIM)..................................................................................... - Functional Assessment Measure (FAM) - Home help - Home nursing - Level of injury or level of lesion - Motor function - Neurological level.......................................................................................................................... - Orthostatic hypotension - Paraplegia and tetraplegia - Respite care................................................................................................................................... - Sensory function - Sleepover - Supervision - Vocational support
- Factors that affect attendant care
- Factors that may reduce the amount of attendant care
- Factors that may increase the amount of attendant care
- Recommendations for attendant care..................................................................................................
- The different spinal cord injury classifications
- C1-C3 ASIA A or B recommendations
- C1-C5 ASIA C recommendations
- C1-C5 ASIA D recommendations
- C4 ASIA A or B recommendations
- C5 ASIA A or B recommendations
- C6 ASIA A or B recommendations
- C6-C8 ASIA C recommendations
- C6-C8 ASIA D recommendations
- C7-C8 Asia A or B recommendations
- T1-T6 ASIA A or B recommendations
- T1-T10, L1 ASIA C recommendations
- T1-T10, L1 ASIA D recommendations............................................................................................
- T7-T10, L1 ASIA A or B recommendations
- L2-L5, S1-S5 ASIA A or B recommendations..................................................................................
- L2-L5, S1-S5 ASIA C recommendations
- L2-L5, S1-S5 ASIA D recommendations
Background to the ACC Spinal injury guidelines
The New Zealand Accident Compensation Scheme provides lifelong support for people who have had a traumatic injury to their brain or spinal cord (or both), multiple amputations, serious burns or blindness. Coverage under the Scheme is provided regardless of fault.
In 2002 the New South Wales Motor Accidents Authority (MAA) released Guidelines for levels of attendant care for people who have a spinal cord injury. The MAA Guidelines have been used within the New South Wales Motor Accidents Scheme to determine care levels for people with a spinal cord injury living in the community. Since then, the 2002 version has been revised and superseded by the 2007 version.
ACC obtained permission to use the MAA 2007 Guidelines on a temporary basis, while an expert informant group adapted the contents for New Zealand conditions.
Note: The MAA Guidelines had been adapted from Outcomes following traumatic spinal cord injury: clinical practice guidelines for healthcare professionals, an American guide developed in 1999 by a multidisciplinary expert panel funded by Paralyzed Veterans of America. In May 2006 ACC verified that these guidelines were developed following a robust and valid process, using an Appraisal of guidelines for research and evaluation (AGREE) instrument.
D New Category New Category New Category New Category
For each of the new categories listed in the matrix above, relevant content was created on Abilities & Assistance Typically Needed and Levels of Human Support. The sub-committee’s recommendations were subsequently endorsed by the full expert informant group.
In the third workshop a sub-committee of the expert informants group developed equipment lists for all types of complete and incomplete spinal cord injury. These have been published in a separate document, as the purpose of these Guidelines was recommendations about attendant care.
The expert informant group made its full recommendations to ACC on 31 March 2008. The majority of the expert informant group’s recommendations have been adopted for this publication (the only recommendations not adopted were those which were inconsistent with ACC’s operational policies).
Note: The sub-committee would like to acknowledge the immense work the Australian team had undertaken in providing Guidelines for this very complex area of spinal cord injury management.
Acknowledgements
ACC extends thanks to the expert informant group for their assistance in adapting the NSW Motor Accidents Authority Guidelines for New Zealand conditions. The work of Jo Hinds-Brown in independently facilitating the work of the expert informant group and the various sub-committees is gratefully acknowledged.
Workshop 1 members Marianne Cox, Occupational Therapist and Operations Manager, Auckland Spinal Unit Jonathan Kwan, Physiotherapist and Section Head, Auckland Spinal Unit Maria Low, Clinical Nurse Specialist, Burwood Spinal Unit Viv Mulgrew, Speech Language Therapist, Burwood Spinal Unit Xianghu Xiong, Director and Spinal Consultant, Burwood Spinal Unit Andrew Hall, Chief Executive New Zealand Spinal Trust Cecelia Elderkamp, Community Occupational Therapist, Hawkes Bay Thomas Callagher, The Association for Spinal Concerns (TASC) Representative, Auckland Corrie Pascoe, Occupational Therapist, Senior Support Co-ordinator, ACC National Serious Injury Service Janice McIntyre, Occupational Therapist, Programme Manager Rehabilitation Service Delivery Unit, ACC Corporate Office Sandie Waddell, Manager Customer Access, ACC Corporate Office.
Apologies were received from Tracey Emmerson, Community Registered Nurse, Wellington.
Workshop 2 members Marianne Cox, Occupational Therapist and Operations Manager, Auckland Spinal Unit Jonathan Kwan, Physiotherapist and Section Head, Auckland Spinal Unit Maria Low, Clinical Nurse Specialist, Burwood Spinal Unit Andrew Hall, Chief Executive New Zealand Spinal Trust Cecelia Elderkamp, Community Occupational Therapist, Hawkes Bay Corrie Pascoe, Occupational Therapist, Senior Support Co-ordinator, ACC National Serious Injury Service Janice McIntyre, Occupational Therapist, Programme Manager Rehabilitation Service Delivery Unit, ACC Corporate Office Tracey Emmerson, Community Registered Nurse, Wellington.
Apologies were received from Xianghu Xiong, Director and Spinal Consultant, Burwood Spinal Unit.
Workshop 3 members Jonathan Kwan, Physiotherapist and Section Head, Auckland Spinal Unit Cecelia Elderkamp, Community Occupational Therapist, Hawkes Bay Xianghu Xiong, Director and Spinal Consultant, Burwood Spinal Unit.
The client’s first Support Needs Assessment needs to be completed as part of planning for discharge from the spinal unit or rehabilitation facility. Support and Service Coordinators need to carefully review the advice given in the assessment against the recommended number of hours of support given in these Guidelines. Support and Service Coordinators should pay particular attention to the definitions in these Guidelines for:
Supervision Active nights Sleepover care.
These Guidelines do not have recommendations for hours of supervision as these are incorporated into the recommended hours for attendant care. The recommendations for the total number of hours of attendant care are given without specific reference to whether this care is at Level 1 or Level 2.
A high proportion of Level 2 attendant care is to be expected for clients with spinal cord injuries at C1-C3, but would be exceptional for clients with an injury at C4 and below.
Any advice that Level 2 attendant care is needed should be cross-checked with the evidence that the assessor has provided in the FIM or FAM Score of 5 or Less section and the Medical Support Needs section on the Support Needs Assessment form (ACC4202).
When reviewing provider options for Level 2 attendant care, bear in mind that if family members are being considered they will need extensive additional training before they start providing attendant care, and they will require on-going supervision to ensure Level 2 standards of care are being provided consistently and reliably.
Assessor advice for hours within guidelines If the proposed hours of attendant care are within the parameters set out in the Guidelines, then move directly onto researching provider options for discussion with the client and their partner/family supporters.
Assessor advice for hours outside guidelines If the proposed hours of attendant care are outside the parameters set out in these Guidelines, check the reasons why an exceptional response is required (refer to the ‘Individual Home Support & Like Services’ section on the Support Needs Assessment form). If the reasons are absent or insufficient, phone the assessor to obtain it. No additional fees will be paid to the assessor for this. Make sure the reasons justifying an exceptional response are properly documented and attached to the assessment for future reference.
Adapted (with permission) for New Zealand conditions from the NSW Motor Accidents Authority 2007 publication Guidelines for Levels of Attendant Care for People with Spinal Cord Injury.
Definitions
Active nights 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.
ASIA impairment scale 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.
ASIA international standards for neurological classification of spinal cord injury worksheet (PDF 579KB)
It is important to include the score on the ASIA impairment scale in the referral for a spinal injured client. This score can usually be found in the medical notes of a client who has been admitted into either of the spinal units.
The ASIA impairment scale has five categories as follows:
Category Definition
A = Complete No motor or sensory function is preserved in the sacral segments S4-S
A = Complete No motor or sensory function is preserved in the sacral segments S4-S
B = Incomplete Sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S
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
Autonomic dysfunction 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 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.
Complete versus Incomplete spinal cord injury 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.
Brown-Sequard syndrome 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.
Child-care services 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.
Community access 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.
Educational support Includes those services (including resource preparation and planning) required to allow the individual to enter and remain at school or other educational facility.
Functional Independence Measure (FIM) 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.
Note: 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.
Functional Assessment Measure (FAM) 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.
Note: Some information sourced from The Centre for Outcome Measurement in Brain Injury (external link).
Home help 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
Neurological level 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 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 and tetraplegia 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 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.
Sensory function 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.
Sleepover 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.
Supervision 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.
Vocational support Includes those services required to assist the individual obtain and maintain paid employment.
Co-existing conditions , such as arthritis, obesity, depression, spasms, contractures, pressure sores, spinal syndromes, or poorly controlled neuropathic bowel dysfunction.
The period following hospitalisation, surgery, or acute treatments.
Major life transitions such as the loss of employment, moving from school to work, relationship difficulties, illness, loss of informal support system, death/separation/divorce or retirement. However, attendant care should only be considered as a last resort after more appropriate responses such as referral to a psychologist or counsellor have been tried and have proved to be not viable
Ageing – general and specific factors related to the disability. For example, a person who has been independent in transfers and has used a manual wheelchair may over time develop early onset of arthritis or over-use syndrome because of the additional strain on their arms.
Pregnancy
Responsibility for children. There may be a need for greater flexibility in hours and the provision of services.
Access to all appropriate support , eg housing modifications
Geographical location of the individual e.g. increased travel time to specialist appointments and access to community facilities.
At work, school or study , if the appropriate level of support cannot be provided by the facility.
The person’s potential function should be considered against their life factors and the need to conserve energy for more intensive functional tasks and / or the prevention of overuse injuries. For example, a person may choose to use their energy to participate in work and therefore requires attendant care on work days, despite being capable of independence in that area.
Potential for harm – some people can actually harm themselves by doing things independently that other people with the same level of injury would have an attendant carer support them with. For example, a person transferring independently can inadvertently damage their skin through a shearing motion, which they don’t notice because of lack of sensation. If this person also has very little attendant care, the damage may go unnoticed for some time, thereby risking infection and major skin breakdown.
Extreme independence leading to possible self-harm should be considered before approving any request for amounts of attendant care significantly below the recommendations in these Guidelines.
Conversely, some people may ask for an attendant carer to help them with tasks that others with the same level of injury carry out independently. In such cases, options for building up the person’s confidence and belief in their abilities, and some social contact with others with a similar level of injury would be a more appropriate response than increasing the amount of attendant care.
Recommendations for attendant care
There are sixteen sets of recommendations corresponding to different types of spinal cord injury.
The different spinal cord injury classifications
Each type of spinal cord injury classification listed below is linked to a description of abilities and types of assistance typically required, and the recommended total hours of human support the injured person would need.
The recommendations are based on:
the level of injury to the person’s spinal cord an assessment of the person’s upper extremity motor function and related motor scores using the American Spinal Injury Association (ASIA) Standard Neurological Classification of Spinal Cord Injury an assessment of the person’s ability to walk.
The recommended hours of human support are for a ‘typical’ person with a spinal cord injury who lives independently (alone or with others) in the community in an appropriately modified environment.
When assessing a person’s support needs, individual circumstances will always need to be taken into account.
There are a range of factors that can put a person outside the range typically required by people with the same level of injury.
