MSA Trust

12. Financial Affairs

Benefits:

Understanding which benefits may become relevant to you as your MSA progresses is important as it can help inform the choices you make, for example, about when to give up working or whether to take a lump sum from a pension pot.

Claiming the correct benefits will maximise your income. Most benefits can’t be backdated so if you don’t apply at the right time you could miss out.

The benefits system is complex and there are variations across the different countries of the UK and the Republic of Ireland. What you are entitled to will depend upon a number of factors which may include your level of care support needs, your age and your financial situation. In most cases means-tested benefits will assess couple’s finances jointly. It is important to note that some benefits are not means-tested and can be paid to people regardless of whether or not they are in employment.

We can provide information on the range of benefits and entitlements and how to claim them. Entitlement to benefits should be reviewed at least annually and certainly whenever there is a significant change (for example, you move home, you cease working, your relationship status changes or your MSA progresses). Carers can also be entitled to benefits in their own right.

It is important to complete benefit claim forms in the correct way, giving as much detail as possible. We can help with this. You may also like to look at our factsheets on benefits:

For an overview on Benefits: https://www.msatrust.org.uk/wp-content/uploads/2015/11/FS404-V1.2-Basic-Benefits-Entitlements-2.pdf.

Attendance Allowance (for those over state pension age): https://www.msatrust.org.uk/wp-content/uploads/2015/11/FS405-Attendance-Allowance-V1.0-1.pdf.

Personal Independence Payment (for those under state pension age): https://www.msatrust.org.uk/wp-content/uploads/2015/11/Personal-Independence-Payment-V1.0-1.pdf.

Financial Planning:

If you have savings or a private pension, or you own property, do consider getting specialist advice on financial affairs. This can be important for a number of reasons. For example, if you needed nursing home care do you know if your home would be taken into account to help meet the costs? How might the way your savings are banked (jointly with a partner or separately) affect a financial assessment for care expenses? Will taking a private pension (as a monthly benefit or as a lump sum) impact on benefit entitlements? How will your savings/income (and that of your partner) affect entitlement to financial help with housing adaptations? How might you best ensure financial stability in the future for your loved ones?

Be sure to consult a professionally qualified and registered adviser as soon as possible. You can only make decisions like this if you have the mental capacity to do so and are able to communicate your decision.

Regardless of your financial position having knowledge about how systems work is helpful. For example, do you know what equipment might be funded by a statutory source and what might you have to fund yourself? How might the ongoing needs and expenses of your household be met if your earnings reduced? We can provide information and support like this.

Care Costs:

The ways in which care costs are met varies across the countries of the UK and the Republic of Ireland. This is currently a matter of much debate and changes may be made to the systems in the relatively near future. In some areas means-tests apply for some or all care costs. It is important to find out about the system in your area and plan appropriately.

Your wishes, your health, your informal support systems, your housing and your finances may all affect these costs. It is wise to consider a range of scenarios and to discuss these with your family. It is not usually possible to recoup care costs retrospectively so understanding the system may save you money.

Equipment Costs:

Many people are uncertain as to what equipment is provided free of charge (and by whom) and what may have to be purchased privately. In most areas wheelchairs, hospital beds and medical aids are supplied free of charge. Always speak to your local team before purchasing expensive equipment, or if you have concerns about the appropriateness or safety of a piece of equipment. It may be possible to hire equipment for a trial period prior to purchasing it.

Housing Adaptation Costs:

Again, systems vary in different regions. Before commencing any building work or home adaptations do consult an your local Occupational Therapist (OT) and ask about grants. It is not usually possible to recoup costs afterwards. Proceeding without the advice of an OT may also mean that the adaptations are less appropriate for your longer-term needs. This can be a costly mistake that takes time to rectify. Planning adaptations takes a long time so consider this issue at an early stage if you can.

Powers of Attorney:

Powers of Attorney (known by slightly different names in the different countries of the UK and the Republic of Ireland) are legal documents whereby you authorise another person/people, known as your attorney(s) to make decisions about your financial affairs on your behalf. You will need to look at your national Governments advice for this as it’s different across every country in the UK and Ireland.

Because people with MSA are likely to struggle with verbal and other types of communication creating a Power of Attorney can allow you to discuss your future wishes with your loved ones/professional advisers and give authority to those you trust. Without such a document the management of your financial affairs can become much more complex. Please don’t just assume that your partner or next of kin will have the automatic right to take on this responsibility – it is usually not the case.

Wills:

Like Powers of Attorney, Wills can only be made by people who have ‘mental capacity’. Wills are legal documents that allow you to decide who will inherit your property, money and possessions after your death. If a person dies without a Will then settling their affairs can be more complex and costly for those left behind and may mean that those you thought would benefit won’t.

Key Messages:

  • Understanding benefit entitlements can help inform the choices you make, review these annually
  • Understanding how care support, equipment and adaptations is funded in your area can increase your options and save you money
  • Planning ahead with Powers of Attorney and Wills can offer you and your loved ones reassurance that your wishes will be respected.

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.