There are a number of different forms of benefit which you, as the parent and carer of a child with Niemann-Pick, are entitled to. This can help to ease the pressure a little, and provide that extra bit of financial support – so make sure that you find out what you may be eligible for and also that you get in touch with Karen Thomas (she’s a pro at deciphering the difficult application forms, and will talk you through everything!)
Disability Living Allowance (DLA):
Perhaps one of the most well-known benefits, DLA may be awarded to a child or young adult if they mobility problems, difficulties with personal care, or if they require supervision from another person. All of these symptoms are present in individuals with Niemann-Pick disease – so it is ordinarily the first one to consider if you are looking into seeking financial support.
It’s important to note that DLA is not means-tested or based on national insurance contributions, and is tax-free. So therefore you may claim DLA if you are still working as it will be paid on top of any earnings or other income you may have, and is subsequently not affected by savings or capital you own. (It is almost always paid in addition to other social security benefits and tax credits – but you may spend it on anything you like).
You don’t need to have a carer, or someone helping you to qualify for this benefit – what matters is the help you need. DLA is divided into two different components: the mobility component, and the care component. You can be awarded one or other or both together. The DLA rate is between £21.80 and £139.75 a week, and depends on the level of help the child requires. (Please note: The child may need an assessment to work out what help they need.)
Apply online at: www.dwp.gov.uk/eservice
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:
Disabled Facilities Grants:
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 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.
There are some absolutely amazing grant and wish foundations out there – and that is no exaggeration! They make a huge difference to children and young adults who are fighting life-threatening conditions, and truly enrich people’s lives.
So if your child or loved one is diagnosed and living with Niemann-Pick disease, there is no reason to hesitate in getting in touch with some of the wonderful charities listed below! They make extra special experiences happen, which for an individual (and family) affected by a serious disorder can become priceless memories; going on a wonderful holiday, meeting their favourite celebrity hero, a fantastic bedroom makeover – the list goes on…but they all effectively have the same outcome, which is a magical moment and a very happy young person!
(Please note, grant giving organisations and wish foundations can also assist in a range of other ways; from paying for a new kitchen appliance, to funding a once in a lifetime trip – they can be an amazing)
This charity completely changes the world for special children throughout the UK; whether it’s through donations for treatment and therapy, the provision of specialised equipment, or even organising dying wish holidays – the team are completely dedicated to investing in the lives of disabled children and their families.
Telephone: 01782 600 265 or 01782 600 266
Dreams Come True Charity:
By fulfilling the dreams of children and young adults (ages 2-21 years of age) who are living with a serious condition – this fantastic charity enriches lives by focusing on positive empowerment. They do this by facilitating amazing memories for entire families, which have a lasting impact on every single person involved. The success of this charity is all thanks to the friendly team who provide support and care along every step of the way, and who over the past 27 years have fulfilled more than 5,000 young people’s dreams!
The Family Fund:
By providing grants for families with severely disabled children, The Family Fund champions their dream of an inclusive society where everyone can have access to the opportunity to enjoy ordinary life. In fact they are now the UK’s largest charity providing grants for seriously ill and disabled young people – helping 89,243 families last year with over £36 million provided in grants and services. So yes…it can be a struggle financially, emotionally and physically for families raising a disabled or seriously ill child – but with this magnificent charity in existence, some daily pressures can be eased.
Telephone: 01904 621115
Happy Days Children’s Charity:
This charity believes that every child should experience all of the happiness life has to offer – no matter what. So with this aim in mind they fund and organise holidays, days out, theatre trips and so much more for young people through the UK who are living with special needs. They also provide assistance for young people in hospitals, hospices, and special needs schools, so they have a real community feel to their work which helps to make a very real difference to children’s lives from many different backgrounds.
Telephone: 01582 755999
Make a Wish Foundation:
A very well-known charity, and for good reason! By offering once in a lifetime experiences for children aged 3 to 18 living with life-threatening illnesses, Make a Wish Foundation make dreams come true…literally! They treasure the belief that a child’s life shouldn’t just be about illness, hospitals, and diagnosis – it should instead be about happiness, wonder and hope for the future! The effects that a wish can have on the seriously ill children they provide for can be huge, as it not only brings a smile but also helps to build confidence and positivity going forward…and if anything provides respite from the daily struggles of a life-threatening condition.
Telephone: 01276 40 50 60
Merlin Entertainments Group (Merlin’s Magic Wand):
Merlin’s Magic Wand is a unique charity which delivers magical experiences to seriously ill, disabled, and disadvantaged children across the world. They were formed as part of Merlin Entertainments Group, with the thought that memorable days out to Merlin attractions should not be limited to simply those who are able-bodied – everyone should be able to go out and join in with the fun! Since 2008 they have helped over 290,000 children form special memories with their families and loved ones, and they continue with this fantastic work year in-year out!
Telephone: +44 (0) 1202 440060
Launched in 2001, and wholly committed to making children’s dreams come true ever since, Promise Dreams is a registered children’s charity that creates lasting memories for seriously and terminally ill young people. Sometimes this can mean time away from hospital appointments, a fun trip to a place of their choosing, or even meeting one of their favourite celebrities! Tragically time is not a luxury every family has a lot of, so Promise Dreams always endeavours to create as many treasured memories as possible…and it is only through the hard work, passion, and raw enthusiasm of their team of supporters that they have managed their successes to date.
Telephone: 01902 212451
Rays of Sunshine:
Formed in order to support children who are living with serious or life-limiting illnesses by granting their wishes, Rays of Sunshine have now helped over 49,000 children and young people! And they continue this amazing work every single day, granting wishes to children aged three to eighteen years old – believing that happiness shouldn’t be put on hold due to illness, as happy memories are there for the taking. This is certainly true with this charity, as they do so much to create these magical experiences!
Telephone: 0208 782 1171
Starlight Children’s Foundation:
Over 500,000 seriously ill children – that’s how many benefit every single year from the wonderful work of the people at Starlight Children’s Foundation. By granting wishes for those who need a little brightness in their lives most; critically, chronically and terminally ill children – they provide fun, laughter, entertainment, and lasting memories which are truly priceless. Together with healthcare professionals they have organised; Starlight Pantomimes, Starlight Fun Centres, Starlight Parties, Starlight Distraction Boxes, and Starlight Escapes…programmes which provide entertainment and distraction all year-round for seriously sick children – the world is a brighter place for having this charity in it!
Telephone: +44 (0)20 7262 2881
When You Wish Upon a Star:
Barbara White founded this charity after seeing a seriously ill child fulfil a dream to meet Mickey Mouse…she saw the smiles, the laughter, the joy, and thought that more children should have a positive experience like that when living with a life-threatening illness. From this simple ambition the charity has grown, and the wishes they have granted have totally transformed the lives of children and families…over 16,000 across the whole of the UK to date! These have been as special and diverse as the individuals they have helped, ranging from meeting celebrities and sporting heroes, to going to Disneyland and swimming with dolphins, to sleigh rides in Lapland – and so much more in between!
Telephone: 0115 9791 720
The Willow Foundation:
A very unique charity, in the sense that it is the only of its kind providing special days for young adults aged 16 to 40 years old; The Willow Foundation endeavours to create chances to escape the daily pressures of living with a life-threatening condition by organising special days. These days (12,500+ so far!) uplift and inspire, and are days in which families can share quality time with one another, and where friendships can be celebrated! Founded by former Arsenal goalkeeper and TV presenter Bob Wilson, and his wife Megs, this charity serves as a lasting memorial to their daughter, Anna, who sadly died of cancer aged 31. Anna was a vibrant soul who loved life, and enjoyed the enriching experiences of her own special days – and so it is this which serves as the charity’s inspiration to continue with their work.
Telephone: 01707 259 777
Please take a moment to read this important announcement from Mallinckrodt Pharmaceuticals in regard to the clinical trial of Adrabetadex for NPC-1. We recognise that this may be a surprising and disappointing development for our community as a whole. Please be assured that we are advocating for further, clearer information and will follow up with our response and next steps shortly.
Sandra Cowie, President, INPDA
Joslyn Crowe, Executive Director, NNPDF
Toni Mathieson, Chief Executive, NPUK