Caring for someone with MND can be a financially difficult process. However, benefits and resources are available to offer support.

Carers’ Allowance

Most carers are eligible for Carers’ Allowance, which provides financial support for full-time carers. Anyone who fulfils the following criteria can qualify:

  • You care for someone for at least 35 hours a week.
  • You do not receive more than £95 per week from work (if you work).
  • The person in your care receives Attendance Allowance, or the middle rate (or higher) of Disability Living Allowance’s care component.
  • You are at least 16 years old.
  • You are undertaking no more than 21 hours of study a week (if you study).
  • You fully satisfy and are in compliance with all UK immigration and/or residence laws.

However, you may not be eligible for Carers’ Allowance if you are currently receiving any benefits that exceed the funds allocated by Carers’ Allowance. Such benefits include Incapacity Benefit, Bereavement Benefit, and State Retirement Pension. Some carers receiving these benefits may have an ‘underlying entitlement’ to Carers’ Allowance, which increases the amount of money that they can receive from their current benefits.

In some cases, receiving Carers’ Allowance may lead to the person in your care losing some of their benefits.

If you wish to claim for Carers’ Allowance, are in doubt as to your eligibility for Carers’ Allowance, or wish to discuss any of the matters mentioned above, visit the Carers’ Allowance Unit website.

Direct Payments

As the term suggests, direct payments are payments made directly to a carer from the local council, based on an assessment of the carer’s needs made by Social Services and the council.

Carers already receiving benefits from Social Services should be offered direct payments as a replacement option.

Direct payments will not affect other benefits, as they are not considered a source or replacement of income.

Depending on the needs you are considered to have, direct payments can be used for:

  • Employing someone to provide non-care assistance, such as domestic help.
  • Paying for activities to improve health or general well-being. These include education, training, or a holiday to relieve stress.

Direct payments cannot be used for:

  • Purchasing the services of a replacement carer. While it is possible to obtain replacement care, the person being cared for, not the carer, must receive their own direct payments to fund this service.
  • Purchasing the services of a spouse, family member, or anyone else living in your household who is not a live-in employee.

As MND progresses, the needs of the person in your care will change and increase. Contact your local council as soon as this happens for a reassessment of your needs and direct payment allocations.

Independent Living Funds

Even with benefits, providing for the ongoing needs of someone with MND can be beyond a carer’s means. An Independent Living Fund (ILF) allows someone with MND (or any other serious disability) to pay directly for agency care or a personal assistant.

Unlike direct payments, which are made on behalf of a carer, an ILF is made to remove the need for a carer.

Factors considered in an ILF assessment include age, Disability Living Allowance, capital, and funds received from Social Services.

To find out more, contact your local Social Services branch or your social worker (if you have one), or visit the ILF website.