LAST UPDATED 12/02/13
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It can be a daunting prospect ploughing through all the benefits, grants and concessions that are out there, but you don’t have to do it alone. Plenty of organisations will offer you advice, and the difference it can make to your pocket is well worth the effort.
Your local parent partnership – which you can find through your council - is a good place to start. Local and internet support groups are also really useful for advice from other parents. And don’t forget your social worker too.
You can also find help from your nearest branch of organisations like Mencap and Cerebra, or carers’ associations. Your local Citizens Advice Bureau is another good place to try. They should all be able to help guide you through the mire of form filling and advise you how to access the benefits and grants you are entitled to.
Some local authorities have Welfare Rights Units that can signpost you towards useful grants and benefits. Your local library will also have information about resources in your area.
We have tried where possible on a website link you through directly to the section/page with the information you are seeking. This way, we hope to help you avoid the stress of having to search for the correct page and not being able to find it.
You will also notice that a lot of the websites are government ones. Don't be put off as we believe these particular ones are easy to follow and very informative.
Listed below are some useful tips for finding your way through the system, while maintaining your sanity - together with the main benefits and grants available. You will also find links to websites for more detailed information.
Staring at a 30-page form can sink the heart of even a confirmed optimist, so tackle it in manageable chunks. Slowly slowly catchy monkey as they say!
NB We recommend that you double check some of the government allowances listed with the appropriate departments.
Keep hard & electronic copies
Keep hard and electronic copies of all correspondence which you send and receive.
Save application forms for grants and benefits online. That way, you save time filling in similar applications or re-applying for the same benefit.
Get a diagnosis for your child's learning disability. Labels help access funds.
Be assertiveBe assertive when accessing grants or benefits.
Make notes before attending meetings with officials to ensure you don't forget anything you want to ask.
Take a friend
Take someone with you to the meeting to make notes and help make sure you ask all the questions you came with.
Paint the worst picture
Always paint the worst possible picture of the condition in order to access the benefits or grant you are entitled to. It's easy to lose perspective; what has become commonplace for you is actually stressful, time consuming and difficult if you compare it to an average parent's experience.
Who's done it before ?
If you know anybody who is already receivig the benefit you are applying for ask them to help write up the application. They'll know best what is needed.
Changes from Welfare Reform Act
The introduction of Universal Credit in 2013 / 2014 will replace a number of existing benefits, including income support, housing benefit and tax credits. It does not include Carer's Allowance or DLA. Turn2Us have produced an easy to read guide to Universal Credit
For more information regarding the new benefit cap, Disability Rights UK have produced an easy to read benefits cap factsheet
Personal care and/or mobility
For disabled people under 65 who have difficulties with their personal care and/or mobility. The Disability Living Allowance(DLA) has a care component, which is paid to people who need help to look after themselves, and a mobility component which is for people who have difficulty getting around. From April 2013, this will be replaced by Personal Independence Payment (PIP)
Personal Independence Payment - information for support organisations and advisers
DWP aims to give accurate and timely information about Personal Independence Payment (PIP) to organisations that support disabled people. They have published a branding-free presentation and a quick guide for support organisations and advisers. This will be updated regularly: PIP presentation for support organisations
A taxable benefit for people who look after someone who is disabled. You do not have to be related to, or live with, the person that you care for. You may be eligible for the Carer’s Allowance if you are aged 16 or over and spend at least 35 hours a week caring for a disabled person. A Carer’s Credit is now also available for carers to build up qualifying rights to a state pension. www.direct.gov.uk
Help with council tax reductions and exemptions for council tax are available for disabled people and carers. Clear and informative site.www.direct.gov.uk/
These are available to obtain new accommodation or to improve and adapt existing accommodation.
Social Services Package
All children who have a Statement for their Special Educational Needs are eligible for a ‘package’. You need to contact social services and ask for a Core Assessment to be made, which looks at your child’s and the family’s needs.
Disabled facilities grants
This is a local council grant to help towards the cost of adapting your home to enable you to continue living there.
Child Tax Credit
A means-tested allowance for parents and carers of children or young people who are still in full-time education. http://www.direct.gov.uk
Community Care Direct Payments
Direct payments are local council payments for people who have been assessed as needing help from social services, and who would like to arrange and pay for their own care and support services instead of receiving them directly from the local council. http://www.direct.gov.uk
Disabled Child Premium
You may be eligible for this if you have a child under 19 - or in certain circumstances under 20 - who is getting Disability Living Allowance (DLA) or who is registered blind, as long as the child does not have savings over £3,000.
Education Maintenance Allowance
A weekly allowance of up to £30 for young people who continue to study between the ages of 16 and 18 who live in a household with an annual income of less than £30,810. The Education Maintenance Allowance (EMA) scheme closed to new applicants on 1 January 2011. Schools, colleges and training providers have 16 -19 bursary funds to help existing and prospective students facing financial hardship http://www.direct.gov.uk
Independent Living Fund
This is designed to help disabled people live independently at home rather than in residential care. Payments can be used to employ people to provide personal or domestic care. http://www.direct.gov.uk
Employment and Support Allowance (ESA)
A benefit for people who are unable to work as a result of illness or disability. The ESA has replaced Incapacity Benefit and Income Support paid to people who are not well enough to work. http://www.direct.gov.uk
If you pay rent and your income and savings are below a certain amount, you may be eligible for Housing Benefit. If you are renting a property from a private landlord you may qualify for Local Housing Allowance if you are making a new claim or moving from one rented accommodation to another.www.direct.gov.uk
Community Care Grant
This grant is awarded to help you live independently in the community or to help when there is a lot of extra pressure placed on a family. It does not count as income and does not affect other benefits. http://www.direct.gov.uk
A tax-free benefit for disabled people aged 65 or over who have difficulties looking after themselves because of a physical or mental disability. www.direct.gov.uk
An independent grant-giving organisation helping low income families who are caring for a severely disabled child. Grants are discretionary. www.familyfund.org.uk
Independent Living Fund
Applications for funding considered from those aged 16 or over who are in receipt of social service funding, Disability Living Allowance etc. www.ilf.org.uk
Access to Work grants
Grants to support people getting to and from work and to help them in carrying out their jobs. www.disabilityalliance.org
Grants to help with heating
Funds available to help with heating bills, insulation and energy-saving equipment.
Disadvantage Subsidy - after school clubs, summer holiday schemes
A government funded scheme launched in June 2010 for parents on low income whose children receive free school meals. Parents can access this through their school to ensure children are able to access after school clubs, summer holiday schemes etc. In Hertfordshire, the scheme is known as An Extended Opportunity Fund. www.hertsextendedschools.org.uk
Disabled Persons railcard
Download an application form at the website above. A second person who is a carer or member of staff can travel too at the same 1/3 discount on certain tickets. www.disabledpersons-railcard.co.uk
A charitable service which helps people access the money available to them – through welfare benefits, grants and other help. www.turn2us.org.uk
Cerebra wills and trusts grant
Cerebra offer a grant of £350 towards the legal costs in writing a will or setting up a discretionary trust for your disabled child of any age. Cerebra help with wills and trusts
Nappies and incontinence pads
Nappies/incontinence pads If your child is incontinent you will be eligible for free nappies/incontinence pads from your local Primary Care Trust. Eligibility criteria – in terms of age and number of pads/nappies are allocated a day – differ from trust to trust. You can get a referral to your local primary care trust’s continence service through your GP, health visitor, paediatrician or school nurse.
Help with heating
There are a number of government funded schemes across England, Northern Ireland, Scotland and Wales, which provide help with heating, insulation, storage heaters and boiler replacement. www.disabilityalliance.org
If you are receiving disability living allowance or attendance allowance, you may be eligible for financial help with digital switchover. www.disabilityalliance.org
Benefit Enquiry Line: 0800 88 22 00
Citizen’s Advice Bureau
Follow this link for a useful advice guide www.adviceguide.org.uk
Advice and information for carers including: www.carersuk.org
CarersLine: 0808 808 7777
A national organisation provides information and advice about services in your local area – benefits, community care, equipment, independent living, holidays.
An easy-to-follow government website which lists the kinds of support available for disabled people including grants and benefits. www.direct.gov.uk
Local disability advice services
A directory of advice resources in your local area. www.disabilityalliance.org/
Disabled Living Foundation
Impartial advice, information and training about daily living aids. www.dlf.org.uk
Interconnections http://www.icwhatsnew.com/ Multi-disciplinary resource service for anyone with an interest in learning disabilities, including statutory, voluntary and private agencies, and families. Up to date information about the disabled community.
Caring for a disabled child
Early support programme for pre-school children, childcare, direct payments for disabled children. www.direct.gov.uk
A website that helps you to calculate any tax credits, reductions in council tax, road tax exemption and benefits you may be entitled to. www.entitledto.co.uk/
A benefits and health information service, which allows you to assess yourself for various benefits. www.benefitsnow.co.uk
Information for parents who have disabled children. It provides a dedicated helpline for freeadvice about tax credits, flexible working and rights at work. Telephone helpline 020 7017 0072 www.workingfamilies.org.uk
Contact A Family
Advice about tax benefits and credits, holidays, equipment and education. Free helpline: 0808 808 3555. www.cafamily.org.uk/
Disability Rights Handbook
Produced by the Disability Alliance, this handbook contains comprehensive and up to date information about benefits.www.disabilityalliance.org
Disability Alliance Fact Sheets
Fact sheets Information and advice on benefits, tax credits, social care and other disability related issues.www.disabilityalliance.org
National Centre for Independent Living
Promotes independent living and provides support and information about direct payments and individual budgets. www.ncil.org.uk/
Advice about managing direct payments and individual budgets.www.in-control.org.uk
A charity which helps improve the lives of children with brain-related conditions through research, education and directly support to children and carers. www.cerebra.org.uk
Grants are available for equipment such as sensory toys and specialist car seats.
Cerebra guide to DLA
Follow this link to a step by step guide to claiming Disability Living Allowance for children under 16 with brain-related conditions.www.cerebra.org.uk
Follow Your Dreams
Provides grants for people with Down’s Syndrome and other learning disabilities to attend local training courses or enter competitions. www.followyourdreams.org.uk
The Priority Trust
Gives physically disabled young people greater independence by funding mobility equipment.http://www.prioritytrust.org
Student Loans Company
Means tested student grant for people with disabled dependants.www.slc.co.uk
Jewish Child’s Day (JCD)
Offers grants to a wide range of Jewish children including those with learning disabilities – financial support available for educational and developmental computer equipment, therapy support and rehabilitation.http://www.jcd.uk.com
www.disability-grants.org is a website that has been set up by a mother to help other parents of disabled children and adults find grants. Julia Tyrrell's son has cerebral palsy and she has worked with young people with learning disabilities for a number of years.
www.ukpar.org is a nationwide register of Personal Assistants who can assist people with learning disabilities manage their Direct Payments, Independent Living Funds and Individual Budgets. The site is designed to help bring people with learning disabilities and PAs together.
From child to adult: a guide to disability, transition and family finance
This free booklet has sections for parents and carers and disabled young people, a step-by-step guide to better-off calculations and a list of useful publications, organisations and websites. It answers questions such as: How are family finances affected when a disabled child becomes an adult? When is it most advantageous for a young person to start claiming their own benefits? Can parents change working hours to fit with a disabled young person's new regime?Netbuddy is not responsible for the information provided in these info packs or any of the activities suggested.