Raising funds for individuals with muscular dystrophy

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1 Raising funds for individuals with muscular dystrophy Before deciding to raise funds for a person with muscular dystrophy or an allied neuromuscular condition it would be advisable to clarify what the statutory services have a duty to provide, and in what circumstances they can provide funds. Charitable funds should only be used for things which the statutory services are unable to provide. The list below should help clarify the situation with respect to statutory funding. Mobility including wheelchairs, walking aids (such as rollators) and vehicles. Wheelchairs should be provided by Wheelchair Services, which is a part of the NHS - ask for a copy of their criteria. Walking aids should also be provided by the NHS after assessment by a therapist. Vehicles may be obtained by those with the high rate mobility component of Disability Living Allowance via the motability scheme (this is non statutory provision). Equipment to assist independence at home usually provided free of charge by social services following an assessment by an occupational therapist. Medical equipment provided free of charge by the NHS. Medical treatment provided free of charge by the NHS (always speak to your consultant prior to travelling abroad to investigate treatment options or for alternative therapies). Home adaptations usually funded through a Disabled Facilities Grant free for children under 18 (up to a certain level) but means tested for adults. Liaise with your local social services occupational therapist. Please note, very few charities will fund adaptations. Computers funded by the education authority if for use in school and the employment authorities for use at work (speak to the Disability Employment Adviser at the Job Centre Plus). Education the state has a duty to provide appropriate education for all children. If necessary they can fund education in a private or charitably run establishment. Care Packages liaise with social services. Help may be means tested for social care (such as washing, dressing and meal preparation) as opposed to medical care (care which needs to be given by a nurse or doctor). Holidays funding for respite care may be available via the NHS or social services. When raising funds for yourself or another individual remember the following: Never raise funds without the knowledge and agreement of the beneficiary. Never raise funds for equipment that the individual has not had a professional assessment for. Know how much you need to raise and only embark on something if you are confident it is achievable. Be very clear with donor charities or individuals that the fundraising is for an individual and not a registered charity. Retain all paperwork and receipts, and keep clear accounts. Return any funds which cannot be used for the agreed purpose.

2 How to obtain help If at all possible try to arrange for one of the professionals involved to co-ordinate the fundraising. Approach only those charities or organisations that are appropriate (such as those that the applicant meets the basic criteria for). Criteria for making an application may be based on one or more of the following: Diagnosis. What the request is for. Where the person needing the help lives. The age of the person requiring the help. Financial status of the person or family requesting the help. Employment background (including periods of military service). Support of a relevant professional. Amount of finance required. Where to search for help For a list of the charities most regularly used by people with a neuromuscular condition, along with a brief description of their remit, see below. Almost all applications require the support of a qualified care or medical professional. In most cases those requesting help will be asked to complete an application form which usually involves revealing details of personal circumstances and finances. The Information Officers at the Muscular Dystrophy Campaign have access to a computer software package called Funder Finder for People in Need. They are willing to undertake searches for you but cannot make applications on your behalf. Local libraries usually have a copy of the latest edition of A guide to grants for individuals in need. This is published by the Directory of Social Change. Contact number: Citizens Advice Bureaux and local solicitors often hold details of local trusts. List of charities that may be approached by people with a neuromuscular condition Only charities that offer help throughout most parts of the UK are listed. Condition Specific Charities Joseph Patrick Trust Muscular Dystrophy Campaign 61 Southwark Street SE1 0HL Tel: JPTGrants@muscular-dystrophy.org Web: The Joseph Patrick Trust helps towards the cost of equipment for people of all ages with muscular dystrophy and allied neuromuscular conditions. A completed application form and professional assessment report are required. The Jennifer Trust for Spinal Muscular Atrophy 40 Cygnet Court Timothy s Bridge Road Stratford-upon-Avon Warwickshire CV37 9NW Tel: / Web: Jennifer@jtsma.org.uk JTSMA assists people with SMA with the cost of wheelchairs and other essential equipment

3 Charities that assist children only The Family Fund 4 Alpha Court Monks Cross Drive Huntingdon York YO32 9WN Tel: / Web: info@familyfund.org.uk This charity assists families of severely disabled children under 16 where the annual family income is below 23,000 (2007 figure). Help is given towards days out, holidays and equipment. Help with the cost of driving lessons for parents are also offered. React St Luke s House 270 Sandycombe Road Kew, Surrey TW9 3NP Tel: Web: React assists families with a child under 18, who has a life-limiting condition, with the cost of equipment. Newlife Newlife Centre Hemlock Business Park Hemlock Way Cannock Staffordshire WS11 7GF Tel: / Web: info@newlifecharity.co.uk Newlife helps families of children under 18 where the child is significantly affected by an inborn condition (birth defect or congenital abnormality). Grants are made towards the cost of equipment even equipment that is usually funded by a statutory source if a long wait would adversely affect the child. Caudwell Charitable Trust Minton Hollins Building Shelton Old Road Stoke on Trent ST4 7RY Tel: Web: charity@caudwellchildren.com The Caudwell Charitable Trust funds equipment for seriously ill or disabled children. The Variety Club House 93 Bayham Street NW1 0AG Tel: Web: info@varietyclub.org.uk The Variety Club House helps fund wheelchairs for children under 18.

4 Whizz-Kidz Elliot House Allington Street SW1E 5EH Tel: Web: Will help fund mobility aids including wheelchairs for children under 18. Charities that assist both children and adults Family Action Kingsland Road E8 4AU Tel: Web: The Family Action gives grants for equipment to people of all ages who are on low incomes throughout the UK. Independence at Home 4 th Floor Congress House 14 Lyon Road Harrow HA1 2EN Tel: Web: Independence at Home provide small grants to people that lives at home and are affected by chronic illness or neurological problems. The grants are only given where the balance left to raise is under 2,000. The ACT Foundation The Grants Manager 61 Thames St Windsor Berkshire, SL4 1QW Tel: Web: The ACT Foundation helps fund equipment for disabled people of all ages and modifications to homes, schools, hospices etc. Aidis Trust Floor 7 3 Wall Buildings Wall EC2M 5PD Tel: Web:

5 The Aidis Trust advises on the use of, and helps fund, communication aids (including computers) for disabled people of all ages. Turn2us 1 Derry Street W8 5HY Tel: admin@turn2us.org.uk Web: Giving financial help, information & support for disabled people of all ages. Related publications by the Muscular Dystrophy Campaign Information Technology A factsheet with information about what to think about when buying a computer such as assessments and adaptations. Wheelchair Provisions for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions A comprehensive guidance aimed at helping staff plan appropriate wheelchair and seating provision for both children and adults with a neuromuscular condition. Although primarily aimed at Wheelchair Service staff, it can also be a useful resource of best practice for users, parents, carers and other health professionals. Disability Grants is a website that lists charities and trusts that provide funding towards disability equipment, holidays, housing and days out. For more information visit: Code: DL08 Published: 03/07 Updated: 03/11 Author: Jane Stein, Neuromuscular Care Advisor. Disclaimer Whilst every reasonable effort is made to ensure that the information in this document is complete, correct and up-to-date, this cannot be guaranteed and the Muscular Dystrophy Campaign shall not be liable whatsoever for any damages incurred as a result of its use. The Muscular Dystrophy Campaign does not necessarily endorse the services provided by the organisations listed in our factsheets.