Emergency planning for people with ALS in Australia

An ALS emergency plan is a practical set of decisions, contacts and supplies for situations that can change quickly: choking or breathing difficulty, a fall, sudden illness, loss of power, or the need to leave home. It should show what can be done safely, who can help, and where essential equipment and medicines will be. Planning also reduces the pressure on family members, professional carers and emergency crews when speech, movement or sight is limited.

Australian conditions make local preparation especially important. Bushfire smoke, severe heat and storms can affect cities such as Melbourne, Sydney, Brisbane, Adelaide and Perth, while flooding and tropical cyclones threaten parts of northern Queensland and regional New South Wales. In a medical emergency, the primary call is 000, which connects to the relevant state or territory ambulance service; 112 also works from mobile phones, but 000 remains the standard. Non-emergency support must be kept separate from ambulance dispatch.

A useful plan covers two kinds of disruption. The first is a health crisis that needs urgent assessment, such as severe breathing changes, choking, a head injury after a fall, or an inability to maintain airway safety. The second is a wider emergency, such as a blackout, unsafe building, flood or evacuation. People with ALS, their families and paid carers should build the plan together, record the person's preferences, and revisit it whenever treatment, equipment or living arrangements change.

Create a clear emergency information sheet

Begin with one emergency information sheet kept on paper and saved in a phone or cloud file that authorised carers can access. It should list the person's name, date of birth, Medicare number, GP and ALS or motor neurone disease clinic, specialists, allergies, current medicines, swallowing and breathing instructions, mobility aids, communication method, advance care preferences, and the names and phone numbers of two emergency contacts. For a person using non-invasive ventilation, oxygen, feeding support or suction equipment, include the make, settings and supplier contact. A wheelchair-accessible medical identification card can be carried on the person, while a spare copy belongs in the emergency bag.

The sheet should also explain what a responder may not realise. “I cannot speak clearly,” “I use a cough assist,” or “I need help transfer before eating” is more useful than a diagnosis alone. Keep a simple list of what the person can do independently and what assistance is required. Store copies with the phone, medication records and equipment manuals rather than in one hidden drawer. The NPO Toyama ALS Association's association contact page can serve as a model for recording support contacts and keeping information current across several places.

Use Australia's usual emergency pathway without delay when there is severe breathing difficulty, choking that does not clear, collapse, chest pain, serious injury or sudden loss of consciousness. Call 000, put the phone on speaker if speech is difficult, and follow the call-taker's instructions. State the exact address, access route, floor or lift status, and whether the person is alone. If an ambulance is not required, a GP, nurse service or urgent care clinic may be appropriate, but this decision should be written in the plan with local contacts. The Emergency+ app can hold medical information, although it does not replace a 000 call.

Prepare equipment for outages and extreme weather

Pack an emergency bag that can leave the building quickly. Include several days of usual medicines in original packaging where possible, a current pharmacy list, spare batteries, chargers, power adaptors, masks and tubing, cleaning supplies, a flashlight, water, snacks suitable for the person's swallowing plan, clothing, and a copy of the information sheet. Australian pharmacies can hold repeat medicines and arrange delivery in many areas, but supply arrangements differ between metropolitan, regional and remote locations. Ask the dispensing pharmacy and equipment supplier in advance about urgent replacement and after-hours options, then record those numbers.

For home oxygen or ventilator users, ordinary power loss is a clinical event, not just an inconvenience. Ask the respiratory service how long the backup battery or cylinder supply will last, how alarms should be managed overnight, and what action indicates an urgent call. Charge spare batteries regularly and keep them accessible rather than in a vehicle. A generator must never run indoors, in a garage or near an open door or window because of carbon monoxide risk; outdoor placement, safe extension leads and fuel storage need their own checklist. In an apartment, ask the building manager how residents with mobility equipment are assisted when lifts fail, and keep a flashlight, key copy and downstairs refuge plan.

Extreme heat raises the work of breathing and can make powered equipment vulnerable to overheating. In Melbourne, Adelaide, Perth and Sydney, a hot day may coincide with bushfire smoke, while Brisbane can add high humidity; indoor temperature, hydration, cooling and clean air become part of the emergency routine. Check state smoke and fire warnings, reduce activity, and follow the advice of the respiratory team about air quality or oxygen use. Households should know whether filters are rated for smoke and how filters will be replaced. Broader NANNET resources can help families compare practical equipment guidance with local supplier instructions.

Coordinate family, carers and support services

Appoint a lead person and a backup who can act if the primary contact is unavailable. Their first task is to check the information sheet, medicines, power, communication device and exit route, then call 000 or the relevant support service. Mark who can enter the home, who holds spare keys, who can operate equipment and who can transport the person. Use plain language and photograph the plan if motor impairment makes small print difficult. Written consent should explain which information may be shared with ambulance, hospital and support workers.

Australian funding and service arrangements should be included without assuming one system operates everywhere. A participant in the National Disability Insurance Scheme may ask their support coordinator to record emergency arrangements within the plan and confirm what can be funded for short-term relief. Older people using My Aged Care or a home care package may need the provider to identify a substitute worker and a safe backup address. Even when a regular support worker is unavailable, the household should have a phone tree connecting the client, family, GP, home care provider and local emergency contacts. Ask each organisation how to escalate a change in staffing, medication delivery or accommodation.

Include a communication pathway for anxiety, sensory distress or cognitive changes, and name a familiar person who can interpret the person's preferences. For households that also manage alcohol, prescription misuse or another substance risk, an emergency may involve more than ALS. The Drug-Free Nevada County community network illustrates how agencies and local groups can coordinate prevention, referral and crisis information; its work is separate from ALS treatment, but the transferable principle is to build those connections before a crisis occurs.

Plan for evacuation, travel and temporary relocation

Use official warnings and local knowledge to decide whether to shelter in place or leave early. Warning systems differ by state: NSW uses Emergency Alerts, Victoria uses VicEmergency, Queensland publishes severe weather warnings, South Australia uses Alert SA, Western Australia has Emergency WA, and Tasmania uses TasAlert. Bushfire danger is particularly relevant around Sydney, Melbourne, Adelaide and Perth during the summer fire season, while remote communities may face long travel distances and limited hospital access. Record two exit routes, a meeting place outside the home and transport options that can carry a wheelchair or ventilator.

For flood or cyclone conditions, monitor the relevant state warning service and the Bureau of Meteorology, not social media alone. Northern Queensland communities may need to act before rain cuts roads, and regional NSW can experience fast-moving floodwater; never drive or wheel through floodwater because it may hide damage or currents. A person who cannot move quickly needs a pre-arranged vehicle, accessible pickup point and a person authorised to collect necessary equipment. Confirm that the driver knows how to secure a wheelchair, oxygen cylinders and non-invasive ventilation equipment, and that the destination has power and refrigeration if feeding support is required.

A relocation plan should cover a nearby staffed residence, a motel or hospital-adjacent room with step-free access, and a further fallback beyond the immediate fire or flood zone. Call ahead about power outages, lifts, refrigeration, oxygen rules, cooling and space for carers. Keep a small travel pack with the information sheet, two to three days of medicines, charging equipment, masks, batteries and clothing; do not rely on a shop being open during a closure. Before returning home, wait for official all-clear advice and arrange a building inspection, since smoke, water and power damage may not be visible immediately.

Test the plan and keep it current

Practise the plan in short, realistic drills rather than treating it as paperwork. One drill can cover a fall with an injury and no phone; another can cover a power failure at night, a blocked lift, a missed home-care visit and a sudden need to relocate. Use the actual equipment and note how long it takes to find keys, medicines, documents and the communication device. Keep the exercise calm, invite the person with ALS to set the scenarios, and correct steps that rely on speed, strength or voice that the person does not have.

Review the sheet after every fall, hospital admission, equipment change, new medicine, new service provider or change of address. A fixed quarterly check is useful even when nothing major has changed because batteries expire, phone numbers change and disaster risks shift. Reconfirm the GP and pharmacy, medication doses, ventilation settings, backup-power duration, evacuation routes and the availability of every person named in the plan. After an emergency, record what worked and what failed, while treating the review as a learning process rather than blame.

Community learning can keep a plan practical. The NPO Toyama ALS Association shares news and activities that reflect the value of local networks, and current association news updates can prompt families to compare their own contacts and resources. In Australia, local fire and ambulance services, councils, disability organisations, schools, pharmacies and aged-care providers can all contribute useful information. A plan that has been discussed, tested and refreshed is ready to protect independence when an emergency arrives.