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Adults Living with SMA: Personal Independence Payment (PIP)

Adults Living with SMA: Personal Independence Payment (PIP)

Last updated: April 2024

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.

In Scotland people can apply for Adult Disability Payment. The ‘Getting Ready’ tab below may still be helpful.

The amount of PIP someone gets depends on how their condition affects them, not the condition itself. It is not means-tested, so it does not matter how much income or savings people have. PIP is usually paid every 4 weeks. It is tax free. People can get it if they are working or not working. If their claim is agreed, the letter they get tells them when it will be next reviewed.

If you are new to this and going to apply, your application needs to give a detailed picture of your situation. It needs a lot of careful thinking and planning.

The rest of this section tells you more about the system in England and Wales.

Follow this link if you live in Northern Ireland. The ‘Getting Ready’ section below may still be helpful.

In this 5-minute video Jasmine shares some of her recommendations and tips on applying for Personal Independence Payment (PIP):

You must:

  • have had difficulties with daily living or getting around (or both) for 3 months
  • expect these difficulties to continue for at least 9 months
  • have lived in England, Scotland or Wales for at least 2 of the last 3 years, and be in one of these countries when you apply.

PIP is not available to new claimants who are over the upper age limit (age 65 or State Pension age, whichever is higher) unless they:

  • had a previous claim to PIP or DLA which ended within the last 12 months, or
  • they applied before that age, but that claim was not decided.

Attendance allowance (see on this page) is for people over 65 who need help at home because of an illness or disability and who aren’t receiving PIP.

You will be assessed by a health professional to work out the level of help you can get.

Your partner could still get Carer’s Allowance (see on this page) if you have substantial caring needs.

PIP claims are managed by the Department for Work and Pensions (DWP).

Go to:  Gov.UK / PIP / How to Claim

This page explains that you can apply for PIP by phone, post or, in some areas, online. You will need to check your postcode when you start your application.

If you are starting your claim online you will need your:

  • National Insurance number
  • Email address
  • Mobile phone

You or another person can phone on your behalf. You will need to be with them when they call. There are also other ways to claim if you find it difficult to use a phone.

Before you call, you will need to have ready:

  • your contact details, for example your phone number
  • your date of birth
  • your National Insurance Number
  • your bank or building society account number and sort code
  • your doctor or health worker’s name, address and phone number
  • dates and addresses for any time you’ve spent abroad or in hospital

DWP – PIP claims
Freephone: 0800 917 2222
Freetextphone: 0800 917 7777
Monday to Friday: 8am to 6pm
You will then be sent a ‘How Your Disability Affects You’ form to complete.

You will need to fill in the ‘How Your Disability Affects You’ form using the notes that come with it to help you. There is a lot of really good advice on a number of websites about this so we have not repeated this here. It is well worth reading them through and thinking carefully about what you want to say before you fill out your form:

Some Local Authorities have a Welfare Rights Service which can be very helpful. Check your Local Authority website.

If you are having any difficulties or would like to discuss what you might say on your form get in touch with SMA UK.

Once you have filled out your form, return it to the Department of Work and Pensions (DWP). The address is on the form. Make sure to keep a copy.

You will be invited to meet with an independent health professional either at your home or at an assessment centre. This is to assess the level of help you need. It will take about an hour. You can have another person with you.

You will be asked questions about your ability to carry out activities and how your SMA affects your daily life.

The website links we have given you in the ‘Getting Ready’ section (see above) tell you more about what to expect at an interview. The organisation Capita completes the assessments in some areas. Their website also tells you what to expect.

You will get a letter some time after this that will tell you if you will get PIP. If you do, you will be told how much you will get and the date it will be reviewed. This is so that you continue to get the right support.

Appeals

If your application is turned down, you can appeal. You can find out more:

If you are having difficulties at any stage, get in touch with SMA UK.