There are a number of different forms of benefit which you, as the parent and carer of a child with Niemann-Pick disease, are entitled to. This can help to ease the pressure a little, and provide that extra bit of financial support.
No matter what, make sure that you find out what you may be eligible for and also that you get in touch with our dedicated Families Officer Louise Metcalfe right away. She’s a pro at deciphering the difficult application forms, and will talk you through everything! After all, there are a wide range of disability-related financial support, including benefits, tax credits, payments, grants and concessions, and we want to help make sure you don’t miss out and get all of the support you are entitled to.
Some benefits you may be entitled to, include:
Depending on your circumstances, you might also be able to get:
Perhaps one of the most well-known benefits, Disability Living Allowance (DLA) may be awarded to a child or young adult if they have mobility problems, difficulties with personal care, or need supervision from another person. These challenges are common for individuals with a diagnosis of Niemann-Pick disease(s), making DLA a key option to consider if you’re looking into financial support for a child or young person.
It’s important to note that DLA is not means-tested or based on National Insurance contributions, and it’s tax-free. This means you can claim it even if you’re working, as it’s paid on top of any earnings or other income, and it’s not affected by savings or capital you own. It’s almost always paid in addition to other social security benefits and tax credits, and you can spend the money however you like.
You don’t need to have a carer or someone helping you to qualify for DLA—what matters is the help the child or young person needs. DLA is divided into two components: the mobility component and the care component. They can be awarded one, the other, or both together, depending on their needs. (Please note: An assessment may be required to determine what help is needed.)
Personal Independence Payment (PIP) can help with extra living costs if you have both:
You can get PIP even if you’re working, have savings or are getting most other benefits.
There are 2 parts to PIP:
Whether you get one or both parts and how much you get depends on how difficult you find everyday tasks and getting around.
If you need help understanding or applying for PIP please get in touch with Louise who will be happy to help you make a claim for PIP or renew a claim.
Sometimes local authorities offer payments directly, instead of offering services, in order to allow disabled people and carers to buy in the services they have been assessed as needing. This often cultivates a sense of independence rather than dependence, something which can be highly positive for those with Niemann-Pick (and their parents/carers) when managing their own social care needs.
If your child is under 16, direct payments will ordinarily be made to you (the parent) – and upon the child’s 16th birthday they will receive the payments to allow them to buy in the services they been assessed as needing themselves (if they are able to).
With direct payments, the amount you receive should be enough to allow you to meet all of the costs involved in buying in services. This includes tax and national insurance as well as the fee for a police DBS check (should you employ help directly). Social services will usually deduct an amount from the payments equivalent to what you would have been charged had they arranged the services for you. Alternatively, social services may make the payments in full, and then ask you to reimburse them any assessed charge at a later date. Remember: any payments you receive must be used to pay for services to meet the assessed needs.
Direct payment schemes vary across the UK – so for the details of arrangements in your area, you will need to access your local authority’s website for further details regarding your specific situation. You can find out more by searching ‘Direct Payments’ at www.gov.uk.
Carer’s Allowance is a weekly benefit that could help you look after someone with substantial caring needs. It is not a requirement that you need to be related to, or live with, the person you care for – but you must be over 16 years of age, and must spend at least 35 hours a week caring for them.
Depending on the benefits the person you care for receives, you could get £62.10 a week – and can choose when this will be paid; weekly in advance, every four weeks, or every thirteen weeks. This will be transferred into an account, e.g. your bank account.
Please Note: Carer’s Allowance is taxable, and it can also affect your other benefits.
For further information visit: www.gov.uk/carers-allowance
The Disabled Facilities Grant (DFG) can help with the cost of work which improves the infrastructure or environment in your home. This can cover a wide range of things, including the costs of building safe play areas, installing a stair lift, adapting a lighting or heating system, or the fitting of a new bathroom facility.
To be eligible you must be an owner occupier, tenant (private, local authority or housing association), or a landlord with a disabled tenant.
Usually an assessment will be carried out by either your occupational therapist, or a local social services department to determine what is needed. Whatever the scale of the proposed works it must be agreed that these are ‘necessary and appropriate’ in meeting the disable person’s needs, and are also ‘reasonable and practicable, taking into account the age and condition of the property.
DFGs are not means-tested in England, Wales, or Northern Ireland – as long as the grant is provided to meet the needs of a disabled child. In Scotland grants for repairs and adaptations to properties are available from local authorities to both homeowners and private tenants. For more information ask your local authority for the Scottish Executive booklet, Housing Grants.
You should always contact your local housing authority to check what help is available before starting work on your home to make it suitable for you or your disabled child.
For up to date information and advice please visit: www.gov.uk/disabled-facilities-grants
Tax credits are income-related payments made both to people who are responsible for children, and to people in relatively low-paid work. The support available to people with children is known as ‘Child Tax Credit’, whereas the help for those working is called ‘Working Tax Credit’. The responsibility for administering tax credits rests with HM Revenue & Customs. Child Tax Credit is paid directly to the person who is responsible for caring for a child or children. It can be claimed both for your own children and any other children who normally live with you and for whom you are responsible.
Claimants must be at least 16 years old, and be resident and present in the UK. You do not have to be working to claim, but the amount you ultimately receive is calculated using several cumulative elements to suit the different circumstance of your family (including income). And as a result the more elements you qualify for, the more you receive.
For further information and to assess your entitlements, visit the HM Revenue & Customs website: www.hmrc.gov.uk/taxcredits
‘Universal Credit’ is a relatively new single payment for people who are either looking for work, or are on a low income. It helps claimants and their families to become more independent, and seeks to simplify the benefits system by bringing together a range of working-age benefits into a single streamlined payment.
This can be incredibly helpful, as it can include support for a number of different purposes including; housing, children and childcare, disabilities/health conditions, and any care you or a loved one may need. But as with most benefits, the amount of Universal Credit you receive will depend on your own circumstances and income.
Please Note: Universal Credit will replace the following:
Apply for any other benefits you’re eligible for as usual. However once you’ve claimed Universal Credit, any benefits that it replaces will stop and you’ll start getting Universal Credit instead.
For further information visit: www.dwp.gov.uk/policy/welfare-reform/universal-credit/
‘The Blue Badge Scheme’ provides on-street parking concessions for disabled people in the UK. As an individual and/or family affected by Niemann-Pick disease (ASMD or NPC), you may be eligible if you receive the higher rate component of disability living allowance.
The badge can also be used in a number of European countries, in accordance with the European Union – which can lessen the typical struggles that can sometimes come with travel.
To see whether you qualify you should apply to your local social services department or visit:
www.gov.uk/apply-blue-badge for up to date information.
