This section of the web site provides families and carers of those affected by Niemann-Pick disease with information on all the main benefits that you may be entitled to claim.  The links to the 'Contact A Family' website and other sources are updated on a regular basis however this information is provided as a guide only and you should seek advice from your Social Worker, a local Citizens Advice Bureau or the Benefits Enquiry Line (see contacts below).  NPDG (UK) Central Office can also provide assistance or advice on 0191 415 0693 or email.

These factsheets give an overview of all the main benefits available including  the tax credit and benefits system, and focuses on those aspects which affect families with disabled children - visit their website for more information.:

DWP is responsible for a range of benefits and services for people who are sick or disabled, and their carers. Visit their website for more information. 

The Independent Living Fund is a national resource dedicated to delivering financial support to disabled people and advancing standards of independent living which is an Executive Non-Departmental Public Body of the Department for Work and Pensions.

These are income-related payments made to people who are responsible for children and to people in relatively low paid work. The help for people with children is called Child Tax Credit and the help for those working is called Working Tax Credit. Responsibility for administering Tax Credits rests with HM Revenue & Customs.   For further information and to assess your entitlements, visit the HM Revenue & Customs website.

Child Tax Credit is calculated using several cumulative elements to suit the different circumstances of families. The more elements you qualify for, the more you receive. Those elements include: a family element, for all who qualify for Child Tax Credit; a child element for each child within the family; a disabled or a severely disabled child element for any disabled children that you are responsible for.

Disability Living Allowance (DLA) is a benefit that is awarded on the basis of the effect that the symptoms of Niemann-Pick disease have on your daily life. It can be awarded if you have mobility problems, difficulties with personal care or if you require supervision from another person.

To claim, you will need form DLA1. You can get this from your local Jobcentre Plus office or by contacting the Dept. for Work and Pensions (DWP) Benefits Enquiry Line on 0800 882200 or by downloading a copy from their website You can also now claim online.

The Disability Premium

Local Authorities can give payments, instead of services, to allow disabled people and carers to buy in the services they have been assessed as needing.  Direct Payments are seen to promote the independence of parents and their disabled children who would like to manage their own social care needs. If you have a child who is under 16, Direct Payments will usually be made to you as their parent.  When a child becomes 16 she or he can receive payments in their own right to allow them to buy in the services they have been assessed as needing.  In the past you could not insist on Direct Payments, however, in England, a request should now be refused only in very limited circumstances. NB. At the moment Direct Payments schemes are not yet mandatory in Wales. The amount you receive should be enough to allow you to meet all the costs involved, including tax and National Insurance as well as the fee for a police 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. Alternatively, Social Services may make the payments in full and ask you to reimburse them any assessed charge. Any payments you receive must be used to pay for services to meet the assessed needs. Further information on direct payments can be found on the DoH (Department of Health) website.

The Blue Badge Scheme (formerly Orange) is an UK arrangement of on street parking concessions for disabled people. The badge can also be used in many European countries.  If you regularly drive your disabled child and she/he has severe walking difficulties, is registered blind, has severe upper limb disabilities or receives the higher rate component of Disability Living Allowance, you may be eligible.  You should apply to your local Social Services Department.

To be eligible for a Disabled Facilities Grant (DFG) you must be an owner occupier, tenant (private, local authority or housing association) or landlord with a disabled tenant. The grant can help with the cost of works such as building safe play areas, installing a stair-lift, adapting a lighting or heating system, or building a new bathroom facility.  Usually, an assessment will be carried out by your Occupational Therapist or local social services department to determine what is needed.  Whatever the proposed works it must be agreed that these are 'necessary and appropriate' in meeting the disabled person's needs and 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, so 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 your disabled child.  Contact a Family produce a comprehensive factsheet 'Aids, Equipment and Adaptations' giving more information about housing grants, which can be found on their website.

The Family Fund can give lump sums for specific items to help care for a child under 16 years of age with severe disabilities.  In Scotland and Wales only, grants have also been made for children aged 16.  It is hoped that this will continue for the foreseeable future - contact the Family Fund for up-to-date details. Your social and financial circumstances will be taken into account when they assess your application.

The Fund will consider any request, so you can ask for whatever you need most.  For example, laundry equipment, transport expenses, clothing, holidays and so on. To apply, write giving the full name and date of birth of your child, brief details of his/her disability, the type of help you need and whether you have been in touch with the fund before, to: The Family Fund Unit 4, Alpha Court, Huntington, York YO32 9WN Tel: 0845 130 4542 e-mail or visit their website.

Disability - For guidance on how to find out about your rights as a disabled person.

Citizens Advice Bureau - provides up-to-date, independent advice:

Disability Rights Commission - The Disability Rights Commission (DRC) is an independent body, established by Act of Parliament to eliminate discrimination against disabled people and promote equality of opportunity:

Benefits Enquiry Line - Claim forms for all benefits can be obtained from your local Benefit Office or by calling the Benefits Enquiry Line Tel. 0800 882200 (Monday to Friday 8.30am - 6.30pm and Saturday 9am - 1pm. Customers who have a textphone can call the Benefit Enquiry Line free on Tel. 0800 243355).