Advice for people with spinal cord injury
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During the COVID-19 pandemic, it is necessary to practice an increased level of isolation. There may be less support workers available to you resulting in reduction of care support. It is important that you develop a COVID-19 action plan that addresses the need for isolation and possible changes to the availability of your support workers.
- Planning for different supports
- Manage safely with less support
- Training new supports
- Infection control
- Regular medications and health supplies (consumables)
- Disability information helpline
- What else can you do?
- Document information
Planning for different supports
If you become unwell and need medical care, your usual doctor and hospital services are still able to help, although they may use other options, such as contact by phone or video consults. If you have an emergency, you can call an ambulance.
As usual, if you have difficulty breathing or autonomic dysreflexia, call an ambulance and tell them you have a spinal cord injury and that it is a medical emergency.
- Talk to your service providers about their COVID-19 planning. Can they provide backup staff if your regular support workers cannot attend?
- Do you need to consider alternative care providers to supplement your service?
- Are family supports able to assist with some services, such as meal preparation?
- Are there any issues with the supply of your medications and health supplies or consumables?
If you employ your support workers directly, how many do you have? Do you need to recruit additional staff?
- Consider registering with online platforms that connect you directly to support workers. The National Disability Insurance Scheme (NDIS) Disability supports matching platforms web page now has added information about connecting directly with support workers and resources.
Think about what informal supports are available to you.
- Do you have family, friends, neighbours or community members that can assist you with the essentials?
- Do they need training?
- Who could stay with you overnight or even 24/7 if the need arises?
Talk to your funding body, such as NDIS, iCare, or My Aged Care, about possible adjustments to your funding should your needs change as a result of COVID-19. If you are an NDIS participant, there has been some recent changes to allow for adjustments in plans if you have experienced changes because of COVID-19.
Coles and Woolworths have both set up priority online shopping for vulnerable people. You can register using Disability Support Pension card, Health Care Card, Companion Card or NDIS home delivery access code.
Manage safely with less support
What do you need? What could you change or do without?
Your goal should be to minimise the risk of exposure to COVID-19.
Think about what supports and services are essential to keep you safe and healthy. This will not be the same for everyone, so please consider:
- bladder management
- bowel management
- medication management
- respiratory management
- pressure relief, turning and wound care
- basic personal hygiene
- access to food and water
- access to a phone or emergency call system
- reliable internet and telehealth or video call options
- someone to help ensure bills for vital servicesare paid.
Training new supports
Make sure you have an up-to-date care plan that lists all of your personal care routine and have an electronic copy that can be emailed to any new service providers and support staff. You might also include:
- short videos on your phone or tablet of some of the key parts of your care routine
- written information or pictures of how to assist with your essential care needs, such as rolling, transferring, positioning in your chair, cough assist, or setting up equipment
- a list of medications and their timing
- important contact phone numbers and emails
- Disability Services Consulting has the Essential personalised information tool that might help you to think about your needs.
We know that people with spinal cord injury who need hands-on personal care cannot practice social distancing during these tasks. Service providers and their workers should already have an understanding of infection control and engage in infection control practices.
It’s important both you and your support staff practice hand hygiene and avoid touching your face.
During your service keep track of where your hands and your support workers hands have been ensuring yours and your support workers hands are regularly cleaned and the surfaces that you or your support touch during the service is also cleaned.
Ask your supports workers if they have completed the Australian Government’s free COVID-19 training module.
Before allowing support workers into your home:
- ask them to confirm they do not have flu like symptoms, cough, sore throat or fever
- ask them to confirm that they are not been in contact with a person diagnosed with or being investigated for COVID-19
- You may wish to consider a face mask as an additional precaution for times when you cannot maintain physical distancing. Please check the NSW Health website for the latest advice.
Regular medications and health supplies (consumables)
It is wise to have an adequate supply of your usual medications and health supplies or consumables available in case you have a period of self-isolation, but avoid stockpiling. Talk to your service provider or supplier about your needs and any supply issues. Do you have adequate suppliers of personal protective equipment (PPE)? NDIS participants who can no longer access PPE supplies through usual means can contact the National Medical Stockpile by emailing NDISCOVIDPPE@health.gov.au.
icare (Lifetime care and Workers Care) program participants can request a variation for additional PPE, on the Consumables variation order form on the icare website.
Disability information helpline
Information and referrals for people with disability and their supporters about COVID-19.
Contact the Disability Information Helpline on 1800 643 787.
Monday to Friday 8am - 8pm (AEST) and Saturday and Sunday 9am - 7pm (AEST). It is not available on national public holidays.
What else can you do?
- find the latest information
- try to eat well, stay active and get enough sleep
- look after your mental health.
Find the latest information
Find the latest information about COVID-19 recommendations from reputable sites like the NSW and Australian Government health sites.
Look after your mental health
Some people may experience emotional distress or increased anxiety and depression due to the events of COVID-19. Social distancing restrictions may mean that you are unable to see family and friends as frequently. It is important to reach out if you are feeling isolated or distressed. Immediate phone support is available through Lifeline on 13 11 14 or the NSW Mental Health Line on 1800 011 511.
Lifeline: Mental health and wellbeing during the Coronavirus COVID-19 outbreak
Specific information regarding self-care and mental health wellbeing during the COVID-19 pandemic is available at the Black Dog Institute coronavirus:resources for anxiety & stress webpage.
- Tony Jones (Spinal Cord Injuries Australia) and Kylie Wicks (Paraquad).
- Adapted from the Queensland Spinal Cord Injuries Service factsheet with permission.
Spinal cord injury community of practice and Social Workers in Spinal group.
Dr Nigel Lyons, Deputy Secretary, Health System Strategy and Planning, NSW Ministry of Health.
For use by
People with SCI working with care staff at home.