Finance & Insurance
Understand costs, cover, and support options
Review status: Waiting for team review. An AI editorial check was completed on 2026-08-14 by claude-opus-5. It checks clarity, attribution and scope against the sources, and it is not a Compass team or clinical sign-off. Waiting for clinical review. Last updated 2026-08-14.
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Planning 3
- Review current costs and coverUnderstand the likely costs of care, equipment, and appointments.Why it matters: Seeing the whole picture once is less stressful than meeting each cost as a surprise.
- Check what support existsLook at insurance, reimbursement, grants, and other funding pathways.Why it matters: Support that exists is often not offered automatically, so it is worth looking for deliberately.
- Prioritise urgent paperworkStart with the approvals or claims that take longest to process.Why it matters: Ordering the paperwork by processing time matters more than doing the easiest first.
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ALS/MND can affect finances in two directions at once. Costs can rise while income may fall. Naming this openly helps you plan rather than be caught out. The impact differs hugely depending on where you live and your circumstances, but common themes include:
Income may change:
- The person with ALS/MND may need to reduce or stop work, sooner than expected.
- A partner or family member may cut back work to provide care, affecting their income too.
Costs may rise:
- Equipment and home changes. Much of this may be funded or loaned, depending on where you live.
- Care and support. Paid help at home or other services.
- Health and medical costs. These vary enormously by country and health system.
- Day-to-day extras. Transport, higher utility use, adapted vehicles, and similar.
The good news worth holding onto:
- Support often exists. Many places have benefits, funding, charitable grants, and services that can help with both income and costs (covered in the next questions and the disability benefits card).
- You do not have to navigate it alone. Social workers, MND/ALS associations, and benefits advisers exist precisely to help families find and access support.
- Acting early helps. Getting advice sooner rather than later means you can plan, claim what you are entitled to, and avoid unnecessary stress.
Because financial systems, benefits and costs vary so much by country, Compass keeps this general and points you to local advice. Compass does not give financial advice. The next questions cover the kinds of support that may be available, what to check early, and how to find what applies to you.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 3. Households living with ALS/MND can face out-of-pocket costs going up and income going down at the same time.
Supports this. The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France — Orphanet Journal of Rare Diseases · Research review · March 2026
A 2024 survey of 50 French families measured both sides in the same households. Ninety percent had paid for something out of their own pocket, averaging 7,764 euros a year and driven mainly by home and vehicle adaptations, while the average annual loss of household income was 7,633 euros. France covers ALS-related health care in full, so this is what was left after the health system had paid.
“Among them, 45 (90%) patients declared at least once an out-of-pocket expense and the mean annualized cost was €7,764 (SD 9,776).”
Out-of-pocket expenses related to non-medical costsLink checked August 2026
Statement 2 of 3. Most people who are in paid work when ALS/MND starts leave the workforce, and it usually happens within about a year.
Supports this. Examining changing working status and caregiver assistance in amyotrophic lateral sclerosis (ALS) using large-scale European databases as part of PRECISION-ALS — Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · Research review · 2025
Working status was recorded for 1,184 people across nine European ALS centres. Just under half were in paid employment before diagnosis and they left work quickly, with 83 percent no longer working 20 months after diagnosis. It measured leaving paid work rather than reducing hours.
“Up to 45% of plwALS are working prior to diagnosis and their working status changes rapidly, taking an average of 12 months to leave the workforce.”
AbstractLink checked August 2026
Adds context. The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France — Orphanet Journal of Rare Diseases · Research review · March 2026
Shows the same pattern in one country and covers the cutting-back half that the European study did not measure. Of the 24 people who were working when symptoms began, three were still working at interview, two of them part time, and others had moved onto invalidity status or long-term sick leave.
“Only 3 (6%) of them were still working (including 1 full-time and 2 part-time), 13 (26%) in working age benefitted from a status of invalidity as defined by the French health insurance and 8 (16%) were in long term sick leave.”
Patients and family employment and income lossLink checked August 2026
Statement 3 of 3. Caring for someone with ALS/MND often changes the carer's own paid work and reduces the household's income.
Supports this. The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France — Orphanet Journal of Rare Diseases · Research review · March 2026
Of the 25 spouses who were in paid work before the diagnosis, 16 changed their working arrangements: three stopped altogether, three went part time and four went on sick leave. Across all the households surveyed, the average yearly loss of income linked to those changes was 7,633 euros.
“The corresponding estimated annual loss of family (household) income was €7,633 on average in the whole population interviewed.”
Patients and family employment and income lossLink checked August 2026
Adds context. Examining changing working status and caregiver assistance in amyotrophic lateral sclerosis (ALS) using large-scale European databases as part of PRECISION-ALS — Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · Research review · 2025
Gives the scale of the unpaid care behind this. Informal care came mainly from spouses and children and rose from a median of 15 hours a week early on to 60 hours a week later in the illness. Its discussion states that caregiver burden restricts carers' ability to work full time and so affects their income and financial stability, citing other studies rather than measuring it here.
“Informal care hours increased over time, and were primarily provided by spouses and children.”
AbstractLink checked August 2026
Background the team read
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The specific programs differ entirely from country to country, but it helps to know the categories of support that commonly exist, so you know what to ask about locally. A social worker or benefits adviser can tell you which apply where you live.
Common kinds of support:
- Government income support / disability benefits. Payments for people who cannot work or who have a disability, and sometimes for caregivers. (The disability benefits card covers this further.)
- Health-cost coverage. Public health systems, insurance, or schemes that cover some medical, equipment or care costs. How this works varies dramatically by country.
- Care and equipment funding. Programs that fund or lend equipment, home changes, and personal care.
- Charitable and association support. MND/ALS associations and other charities sometimes offer grants, equipment loans, or hardship funds.
- Employment-related support. Sick pay, income protection, or early access to pensions or retirement funds, depending on your situation and location.
- Insurance policies you may already hold. Life, income protection, critical illness, or health insurance can sometimes provide support (the next question covers checking these).
- Tax relief or concessions. Some places offer reductions related to disability or care costs.
A few principles that travel everywhere:
- You may be entitled to more than you realise. Support often goes unclaimed, and one common reason is that people do not know it exists.
- A diagnosis like ALS/MND can sometimes speed up access to certain support in some systems. It is worth asking about.
- The right adviser saves time and money. They know the system and can help you claim correctly.
Compass cannot tell you which of these apply to you, or how much. That depends on where you live and your circumstances, and is a matter for local advice. The next question covers insurance worth checking early.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. In some countries an ALS/MND diagnosis brings faster access to disability support than other applicants get.
Supports this. SSDI and Medicare for ALS — Your ALS Guide · Practical guide
Describes how this works in one country. In the United States the standard 24-month wait had already been shortened to five months for people with ALS, and a law passed in December 2020 waived that remaining five months altogether; applications from people with ALS are also fast-tracked. It says nothing about any other country, so it shows that this happens somewhere rather than how common it is.
“Your application will be fast-tracked, so you should know within a few weeks if you qualify.”
How soon can I get benefits?Link checked August 2026
Statement 2 of 2. People entitled to social benefits frequently do not receive them, though not knowing about them is only one of the reasons.
Qualifies this. Access to social benefits: Reducing non-take-up — Eurofound · Research review · 2015
A study by the EU's living and working conditions agency of why entitled people do not receive social benefits. In each of the 16 member states it examined, at least one benefit went unreceived by over a third of those entitled. It qualifies the reason given here: not knowing is one of three explanations, alongside the cost and complexity of applying, and stigma or distrust.
“Estimates suggest that in each of the Member States identified, there is at least one type of benefit for which over one-third of people who are entitled to it do not receive it.”
Mapping non-take-upLink checked August 2026
Background the team read
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It is worth reviewing any insurance you already hold early, because some policies can provide valuable support and because timing can matter. This is general information, not financial advice; a qualified adviser should guide your actual decisions.
Policies worth reviewing:
- Income protection / disability insurance. This may pay out if you cannot work. Check the terms and how to claim.
- Critical illness cover. Some policies pay a lump sum on certain diagnoses.
- Life insurance. Review what you have, beneficiaries, and any features (some include early-payout or terminal-illness benefits).
- Health insurance. Understand what your cover includes for treatment, equipment, and care, and any limits or approvals needed.
- Workplace benefits. Employers sometimes provide sick pay, insurance, or support you may not be aware of.
Important principles:
- Check before you change anything. It is usually wise not to cancel or change policies without advice, as you may give up benefits you are entitled to, and new cover may be harder to get after a diagnosis.
- Read the terms, or have someone help you. Policies vary a lot; an adviser or your MND/ALS association can help you understand what each one offers.
- Ask about timing. Some claims or benefits are time-sensitive, so early review avoids missing out.
- Be careful with new policies. After a diagnosis, taking out new insurance may be limited or come with conditions. That is another reason to focus first on what you already hold and to get advice.
Keep records together. Gathering your policy documents in one place, and noting key contacts, makes claims and advice much easier. This helps you and anyone helping you.
Because insurance products, rules and protections differ by country and provider, use a qualified local adviser (and your MND/ALS association) for decisions. The next question covers finding the right help.
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The most useful step is connecting with people who know your local system, because they can quickly tell you what you are entitled to and help you get it. You do not have to work it out yourself.
Who to turn to:
- A social worker. Often the single most helpful person for this. Many ALS/MND teams include one, or can refer you. Social workers know the benefits and support available locally and help you access them.
- Your MND/ALS association. They understand the financial side of the condition where you live, and often provide advice, guides, grants, or someone to talk to.
- A benefits or welfare adviser. Some countries and charities offer free advice services that specialise in navigating benefits and entitlements.
- A qualified financial adviser. Useful for personal financial and insurance decisions, especially bigger ones.
- Your ALS/MND team. They can point you to the right support and make referrals.
How to make it easier:
- Ask early. The sooner you get advice, the more you can plan and the less you risk missing time-limited support.
- Gather your information. Having details of your income, costs, policies and situation in one place helps advisers help you.
- Accept help with paperwork. Applications can be complex; a social worker or adviser can often complete or check them with you.
- Ask "what am I missing?" A good adviser can spot support you did not know to ask about.
A note on scams: sadly, people facing serious illness can be targeted. Be cautious with anyone who contacts you unprompted offering financial help, and check with your association or a trusted adviser before sharing details or money.
Because what is available depends entirely on where you live, your local social worker and MND/ALS association are the best starting points. Compass points you to them rather than giving financial advice. The next question offers prompts for these conversations.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 2 of 2. Guidelines put benefits and employment rights among the things to cover from diagnosis onwards, which is why asking early matters.
Adds context. NICE MND guideline — NICE · Clinical guideline
NICE lists benefits and employment rights among the information that should be given at diagnosis, which places this advice at the start rather than later on. It says nothing about what is lost by asking late, so it backs the timing and not the consequence.
“Legal rights, including social care support, employment rights and benefits.”
1.2.3Link checked August 2026
Background the team read
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A few questions ready for a social worker, benefits adviser, financial adviser, or your MND/ALS association can help you find support and avoid missing out. Pick what fits your situation.
Finding support
- What financial support and benefits might I be entitled to here? What about my caregiver?
- Is there support I might be missing or not know to ask about?
- Could my diagnosis qualify me for faster or special access to any support?
- Can you help me apply, or check my applications?
Insurance I already have
- Can you help me review my existing policies (income protection, critical illness, life, health, workplace)?
- Are there benefits in them I could claim, and how do I do that?
- Is there anything I should be careful not to change or cancel?
Costs and planning
- What costs should I plan for, and is there funding for equipment, home changes, or care?
- Are there tax reliefs, concessions, or grants I could apply for?
- How do I plan around changes to our income?
Getting the right help
- Is there a social worker or free advice service I can use?
- Can my MND/ALS association help with the financial side?
- How do I avoid scams or bad advice?
It helps to gather your financial information beforehand, including income, key costs, and any policies. It also helps to bring someone you trust. Remember that the specifics depend entirely on where you live, so local advisers are your best guide; Compass offers information, not financial advice. The disability benefits and long-term care cards cover related ground.
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For people still working, ALS/MND often changes work and income over time. You might reduce your hours, change what you do, or stop work, and income can fall at the same time as costs rise. Planning a little ahead can ease both the practical and the emotional side of this.
Things that can help:
- Decide what to tell your employer, and when. This is your choice. Telling them can feel hard, but it can also open the door to adjustments and support, and to keeping working for longer if you want to.
- Ask about adjustments. Flexible hours, working from home, changed duties, equipment, or a phased reduction can all help you keep working comfortably while it suits you.
- Check insurance and income protection early. You may already have cover through work or a private policy. It is worth checking what you hold before you need it (see the question on insurance worth checking early).
- Look into financial support. Many places have benefits or support for people who reduce or stop work due to illness. What is available varies a lot by country.
The specifics, such as employment rights, sick pay, income protection rules, and benefits, depend heavily on where you live and work. This question covers the general picture; for what applies to you, get local advice. A social worker, an MND association, a benefits adviser, or a financial adviser can help, and the Disability Benefits card covers support programs. Getting advice early usually means more options.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 1. Most people in paid work when ALS/MND begins stop working within a year or two, and leaving work early carries a financial cost.
Supports this. Examining changing working status and caregiver assistance in amyotrophic lateral sclerosis (ALS) using large-scale European databases as part of PRECISION-ALS — Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · Research review · 2025
Working status data for 1,184 people across nine European ALS centres. Just under half were in paid employment before diagnosis, the median time to leave the workforce was 12 months from symptom onset, and 83 percent were no longer working 20 months after diagnosis. Its discussion says leaving work early has a socioeconomic impact, but that the size of it is not yet measured.
“Eighty-three percent of patients were no longer working 20 months post-diagnosis.”
AbstractLink checked August 2026
Adds context. The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France — Orphanet Journal of Rare Diseases · Research review · March 2026
Puts a figure on the income side in one country. Across 50 French households the average yearly loss of income tied to the patient and their family carers changing their work was 7,633 euros, on top of 7,764 euros of out-of-pocket costs.
“The corresponding estimated annual loss of family (household) income was €7,633 on average in the whole population interviewed.”
Patients and family employment and income lossLink checked August 2026
Lived experience
Practical tips and experiences shared by people affected by MND. These are not medical advice and may not apply to everyone.
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