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Adults Living with SMA, Financial and PA Support

Adults Living with SMA, Financial and PA Support

Last updated: April 2024

England and Wales have the same benefits as outlined in the tabs below.

Scotland

Most benefits are as in the tabs below. However, there are some important differences:

Adult Disability Payment is replacing PIP and the Disability Living Allowance. This is happening as part of Scottish devolution.

The MyGov.Scot / Adult Disability Payment pages cover how it works and how to claim.

These pages may also be helpful

Disability Rights UK has useful information.

Independent Assessment Services covers many FAQs about these changes.

Carer’s Support Payment – from 19th November 2023, this started to roll out to replace Carer’s Allowance.

Northern Ireland

Most benefits are as in the tabs below, but there are some differences.

See:

The organisations below give a wide range of information about the schemes and grants  available.  Browse to see what support you and your family might be able to get. You may also want to sign up with your energy provider’s priority services register.

  • Citizen’s Advice:
  • Scope: 
  • GOV.UK: 
  • The Trussell Trust:
  • Money Helper:
  • Sense:  
  • Baby Banks:

    • Other Useful organisations:

    • TaxAid – a charity that helps people on low incomes when they get into difficulties with their tax affairs.
    • Step Change – a charity offering free online debt advice and support.

    The level of health and social care help you receive will depend on an assessment of your needs and the level of support you require to meet them. It may also depend on the services available in your area. This section briefly covers the different possible routes to getting health and social care support. In some circumstances, it is possible to have a joint Health and Social Care package.

    Local Authority (LA) Funded Social Care >

    NHS Funded Continuing Healthcare (CHC) >

    Local Authority (LA) Carer’s Assessment >

    People who have long term ill-health or disability costs, and live in England, Wales or Northern Ireland, can apply for a Personal Independence Payment or PIP.

    Read more >

    You may be entitled to other benefits, for example to help with your income while you are seeking employment or if you have any childcare and housing costs. This will depend on your individual circumstances. By September 2024, the government expects to have completed the transition to Universal Credit (UC) which replaces all the following legacy benefits and tax credits:

    • Child Tax Credit
    • Housing Benefit
    • Income Support
    • Income-based Jobseeker’s Allowance (JSA)
    • Income-related Employment and Support Allowance (ESA)
    • Working Tax Credit

    If you currently receive any of these benefits, you cannot claim Universal Credit at the same time.

    Unless you have a change in circumstances, advice is not do anything about moving to Universal Credit until you hear from the Department for Work and Pensions (DWP).

    Anyone whose entitlement to Universal Credit is assessed through the DWP’s ‘managed transfer process’ will have their income protected. Anyone who moves before this or as a result of changed circumstances will not. So if you are considering applying for Universal Credit it is important to get specialist advice (see below).

    Scottish Choices – for those receiving Universal Credit (UC) and living in Scotland. This system allows you to apply to be paid twice a month. It also allows the amount in UC that is for rent to be paid directly to your landlord:

    Scottish Child Payment may be another possibility if you live in Scotland. It is a weekly payment of £25 that you can get for every child you look after who is under 16 years of age. You would get the payment every 4 weeks if your application is successful.

    Carer’s Credit Is a UK-wide possibility. This is a National Insurance credit which you are entitled to if you are caring for someone for at least 20 hours a week. It helps with gaps in your National Insurance record. Your State Pension is based on your National Insurance record.

    As it is very complicated to work out what you and your partner / informal carer (unpaid) is entitled to, itis well worth seeking specialist advice:

    If you are considering using a Personal Assistant (PA) to assist you day-to-day and are looking for funding support for this, you will first need to apply to your Local Authority (LA) for a Social Needs Care Assessment .

    After the assessment process, you should be given a copy of your assessment. If you are eligible for care and support, you will be offered a Personal Budget. Your LA should work with you to put together a Care and Support Plan detailing the care you need and who will support you.

    Your LA can arrange and manage your care for you, if you want them to.

    If you want to have more control and potentially employ your own PAs, talk to your LA assessor  about what options are available. These can vary depending on factors such as:

    • your circumstances
    • what support you already have
    • what is available in your area.

    There is more information in the tabs (below the video) which may be helpful.

    Michaela, Luis and Katy talk about their personal views and individual stories about employing PAs:

    Using An Agency

    Your Local Authority (LA) should be able to advise you which agencies are operating in your area.

    The advantages of using an agency are that you do not have any of the responsibilities that come with recruitment and employment. Agencies may well be the best option if you do not need much help – perhaps just a little each day.

    If you are looking for a PA to work on a regular basis and to cover specific hours each week, you may find an agency that is prepared to work with you to identify one or more regular PAs and involve you in selection. On the whole though, this is not guaranteed and you may find you have little say as to who you get and sometimes not much control over exactly when either. What they can do to help you may also be limited by what ‘tasks’ they are permitted to help you with. These will be set out in their agency guidelines (for example, some agencies require 2 carers for hoisting). That said, some agencies have excellent staff, high standards and are more flexible. Using an agency also has the advantage that it means there are likely to be more regular reviews by the LA of how the support is working.

    Recruiting & Managing PAs Yourself

    The great benefit is that you are in control and can say what help you want, when and how. The challenge is that you are in charge of recruitment and as an employer have legal responsibilities. For example, you will need to:

    • provide a contract of employment
    • pay tax and national insurance
    • pay into a pension scheme
    • cover sick pay, holidays and insurance
    • cover training needs.

    This option is also not available everywhere if your care is funded by Continuing Healthcare (CHC).

    Every LA has to have a resource list of ‘support brokerage services’ that assist people with setting up and administering the employment side of managing PAs and who can assist with payroll and recruiting PAs.

    Disability Rights UK: Being in Control: Getting Personal Assistants (PAs) looks at the benefits of having a PA, how to find and fund one and all aspects of your employer responsibilities as well as providing links to other useful resources.

    Employing People You Know As PAs

    Some people want to employ someone they know and trust as their PA. Generally, if the person is related to you, or a friend, but they do not live in the same house as you, this can be arranged.

    If the person does live in the same house as you, this is usually not possible. It can depend on your specific circumstances, so if it is something you want to consider, talk with your LA worker about the options for you.

    This is the main benefit for carers and may be an allowance your partner or informal carer (who is not paid to care for you) can apply for.

    Only one of your unpaid carers can get this. To qualify they would have to provide you with at least 35 hours of care per week and you would have to be getting either:

    • the daily living component of Personal Independence Payment (PIP) – see above, or 
    • the care component of Disability Living Allowance at the middle or highest rate (see the DLA tab on this page) .

    Your carer also has to earn under a certain amount and this benefit might affect other beneifts your carer may be claiming.

    For more information:

    Gov.uk: Carer’s Allowance

    Disability Rights UK: Carer’s Allowance 

    Carers UK: Carer’s Allowance  

    This allowance is for people over 65 who need help at home because of an illness or disability. They must not be receiving a  Personal Independence Payment.

    The allowance does not cover mobility needs.

    It is paid at 2 different rates. How much you get depends on the level of care that you need because of your disability.

    The other benefits you get can increase if you get Attendance Allowance.

    You do not have to have someone caring for you in order to claim.

    If you do have a carer, and have substantial caring needs, they could get Carer’s Allowance– see above.

    England, Scotland and Wales – people pay Council Tax:

    You could get a reduction on your Council Tax bill if your home has been adapted or has features that are needed because someone with a disability lives there. For example, this could be because you have an extra bathroom or kitchen, or extra space to use a wheelchair indoors. If your home is eligible, your Council Tax will be reduced to the band below, or by one-sixth if you are in the lowest band.

    There is no set test to decide who is eligible for this, so you will need to contact your local council to find out more. They may ask you for a letter from your GP.

    Council tax may be reduced for other reasons. See:

    Northern Ireland – people pay rates.

    If you are on a low income, you may be able to get help with paying your rates through the Rate Relief Scheme or, for Universal Credit claimants, through a rate rebate. See:

    A number of charities provide grants. Who can apply and what they will fund varies a lot and may change depending on their level of funding.

    Funding for Equipment on this page outlines what information you will need to apply for a grant from a charity.

    There may be other grant possibilities. Please contact the SMA UK Outreach & Support Team to see if we can help you to find charities that may assist you.