From April 2013 the Government is making important changes to the benefits system, some of which are not reflected in this information sheet. We are working on updating this information but in the meantime you can find out more about these changes by reading our last news updates or visiting the following websites:
- General updates on benefits from Disability Rights UK
- The Personal Independence Payment (PIP) toolkit
- Children and Families Bill from Department for Education
As for children, the main benefit available to adults with hemiplegia is the Disabled Living Allowance (DLA). After the age of 16 it is the young person who has to apply. As an adult, it is no longer necessary to compare yourself with non disabled people; you simply need to have a long term condition which affects your everyday activities.
The thinking behind DLA is that people with a disability have extra expenses in their daily lives compared to non disabled people – from the cost of shoes to domestic help to higher heating bills, or having to take a taxi or run a car because you can’t use public transport easily.
- DLA is meant to help cover these extra costs, so it is not means tested; it doesn’t depend on whether you work or not or any other income or savings, either yours or a partner’s. It is also not counted as income if you apply for income-related benefits or credits.
- DLA is yours to do what you want with it, and though at the lower rate it is not a large amount it also opens the door to other benefits and concessions.
- DLA may be awarded for an indefinite period, or for a fixed period, in which case you will need to reapply. It may also be reviewed from time to time to check whether your needs have changed
Some HemiHelp members who had DLA as children have found it is more difficult to get as an adult, or they have been given a lower rate than they think their needs deserve, but it is worth persisting and if necessary appealing. The form can be daunting and it can be useful to get someone else to help you fill it in, either a professional (for example someone at your local Citizens Advice Bureau) or a relative or friend. You need to think through your answers and remember both the good and bad days, and having someone with you can provide emotional as well as practical support.
Also, as you get older your hemiplegia may affect you more seriously, so you may need to reapply for a higher rate of DLA.
DLA has two parts and either or both parts can be claimed.
1. Care component
If you need looking after or help with personal care, you should qualify for the care component. For example, one question on the form asks whether you can cook a main meal from scratch without help. The care component of DLA is payable at three rates, depending on how much help you need.
If you get DLA it might increase the amount of other benefits or credits you’re entitled to, such as Housing Benefit, Council Tax Benefit and Working Tax Credit.
2. Mobility component
If you have difficulty getting around you may qualify for the DLA mobility component. This is paid at two rates, depending on how much difficulty you have with walking.
If you get the DLA higher rate mobility component you can:
- learn to drive when you are 16, and apply 3 months before that
- if aged between 16 and 24, possibly get help towards the cost of driving lessons
- lease or hire purchase a car through Motability www.motability.co.uk/main.cfm If you start by applying for a grant from Motability they will pay for your assessment. They may also pay for adaptations.
- apply for a Blue Badge for free parking, a parking bay and road tax exemption. You don’t have to drive yourself for this or to access the Motability scheme – someone else can drive you. The Blue Badge Helpline can give you more information about using the scheme. The Helpline number is 020 7944 2914 or 0161 367 0009. You can also find more information on the Department for Transport website at: www.dft.gov.uk/transportforyou/access/. In Northern Ireland, you can find information on the Roads Service website at: http://www.roadsni.gov.uk/index/bluebadge/bluebadge-bbscheme.htm
- qualify, as a Blue Badge holder, for a 100 per cent exemption from the London Congestion Charge, but you must register with Transport for London (TfL) at least 10 days before your journey and pay a one-off £10 registration fee. For more information phone 0845 900 1234 or download a registration form from the TfL website http://www.tfl.gov.uk/assets/downloads/blue-badge-discount-registration-form.pdf
For more information see HemiHelp’s DLA and Driving information sheets, and useful addresses below.
Note: The UK government is proposing to replace DLA for people of working-age (16-64) with a new benefit called Personal Independence Payment (PIP) from 2013. For more information go to www.dwp.gov.uk/policy/disability/personal-independence-payment/
Income related benefits
Working tax Credit (WTC) is a benefit for people who are in work but with low earnings.
- Generally you need to be 25 or over to claim it, but if you are receiving DLA you can claim it from the age of 16.
- If you are disabled you, or your partner if you have one, normally needs to work 16 hours a week
- If you get DLA at the highest rate you are entitled to an extra disability element.
- If you get DLA at the highest rate and are living with a partner who qualifies for WTC, he or she can get the extra credit.
- However, Working Tax Credit may affect other income related benefits you get, for example, Housing Benefit and Council Tax Benefit.
For details see www.hmrc.gov.uk/Taxcredits/
Anyone with hemiplegia who is unemployed and looking for work can receive income-based Job Seekers’ Allowance. Local Jobcentres have Disability Employment Advisors to support people with a disability into work.
Anyone assessed as being unable to work may be able to claim Employment and Support Allowance (ESA), which has replaced the old Income Support and Incapacity Benefit. Anyone applying for this benefit has to go through a medical assessment. If you have a partner who is working, his or her earnings may affect the allowance.
Depending on your circumstances, both of these allowances may give access to Housing and Council Tax benefits, as well as free prescriptions, sight tests and dental treatment.
HemiHelp’s Family Benefits Information Sheet has more information on these benefits. However, .if you under 35, single and without dependents, new rules introduced in 2012 will affect the level of housing benefit you can claim.
If you rent from a private landlord, you will receive housing benefit – also known as local housing allowance (LHA) - only at what is called the 'shared accommodation rate' – the same as you can get to help pay for the cost of a single room in shared accommodation. However, if you receive the middle or higher DLA care component these changes will not apply to you.
Young people aged 16-18
If a young person aged 16-18 is at school or college or on an approved job scheme, and is getting DLA at any level, he or she may still be able to claim income based ESA. However, the family may opt to continue to receive certain benefits such as Child Benefit and Child Tax Credit instead. Which is better depends on family income - in general the higher it is, the more it makes sense for the young person, rather than his or her parents, to claim benefits. Contact a Family (see links below) has a useful guide: Money When your Child reaches 16 Years of Age.
Other financial help - may depend on receiving DLA
- www.uk-energy-saving.com has a set of schemes for people on disability or income related benefits that provide grants for measures to make homes warmer, for example central heating or insulation. Depending on where you live, the schemes are called Warm Front (England) Energy Efficiency Scheme (Scotland) / Nest (Wales) and Warm Homes Scheme (Northern Ireland)
- Disabled people can get VAT relief on home adaptations, specialised clothing, furniture, equipment etc. related to their disability. You do not need to be receiving DLA or other disability benefits, just fill in a form saying that you have a disability, although HM Revenue &Customs (HMRC) have a right to inspect. For details see www.hmrc.gov.uk/vat/sectors/consumers/disabled.htm
- Disabled Facilities Grants (in Scotland, Home Improvements Grants) are means tested awards available for making alterations to your home because of a disability. Go to www.direct.gov.uk/en/disabledpeople/homeandhousingoptions/yourhome/dg_40... or contact your Local Authority. Scope has a useful factsheet at http://www.scope.org.uk/help-and-information/money/disabled-facilities-g....
- Local concessions Although there is no longer a national disability register, your Local Authority may have a register which gives the right to concessions for e.g. local leisure facilities, public transport or taxis, or a Blue Badge. Often ‘disabled’ is used to mean ‘getting DLA’ but each LA has own rules.
- A National Rail Pass gives a disabled person and one other adult one third off ticket prices.
- Disabled people can travel for free on local buses in England, Scotland and Wales, and for half price in N Ireland.
- theatres, concert halls, museums etc. usually give a discount and/or a free ticket for a carer.
- most national cinema chains are members of a scheme where if a disabled person buys a ticket a carer goes free. Forms can be downloaded from www.ceacard.co.uk to apply for a plastic card. This is not free but will pay for itself after one visit.
Housing, social care
Most people with hemiplegia live in ordinary housing, with adaptations if necessary, and get by without help other than that given by family and friends, or paid for out of DLA.
A few however will need more financial and other support, and how to provide this is the subject of much debate in the UK (as in other countries). Much of this is because more people are living longer and needing help towards the end of their lives, but often when social care is discussed disabled people are lumped in with the elderly, even though their needs are different.
At the same time there is a continuing trend towards disabled people taking more control of their lives, with direct payments, individual budgets, self-directed care - ideas that have come from disabled people themselves and are gradually being adopted by care providers. Your local council can tell you about its services and about supported or sheltered housing in your area.
Scope has useful publications on this subject, including:
My Money, My Way: A young person’s guide to Direct Payments
Action 19+: A guide to getting what you need from your local authority at 19 plus. For more information phone 020 7619 7342 or go to www.scope.org.uk/publications/dislive.shtml
Association for Supported Living www.a-s-l.org.uk is a not-for-profit organisation dedicated to the continuous improvement of supported living services for people with learning disabilities.
Housing Options www.housingoptions.org.uk is an independent advice and information service whose aim is to assist people with learning disabilities achieve greater control over aspects of their life and to provide more housing and support choices. Factsheets on all aspects of housing from rights to adaptations.
In Control www.in-control.org.uk is a social enterprise that was set up to transform the current social care system into a system of Self-Directed Support and Individual Budgets. The website has factsheets on how this works, and also on getting a job
Financial help if you are in education
16-18 years olds living in Scotland, Wales and N Ireland who stay in education may be eligible for Education Maintenance Allowance (EMA), a grant of up to £30 a week, if their family income is low. EMA is no longer available to students in England, but 16-18 year olds receiving DLA may get a bursary of £1200 a year if they would otherwise have problems meeting their study costs, and others may be awarded a smaller amount. These bursaries are administered through the student’s school, college or training provider. To find out more, go to www.direct.gov.uk/en/EducationAndLearning/14To19/MoneyToLearn/16to19bursary/DG_067575.
For information about financial and other support for further education go to www.disabilityalliance.org/skillpubfe.htm
If you are planning to go to university, you should apply for the Disabled Students Allowance (DSA), a generous package which pays for learning support and specialised equipment as well as ongoing costs such as photocopying and ink cartridges. For further details and to download an application form go to www.direct.gov.uk/en/DisabledPeople/EducationAndTraining/HigherEducation...
UCAS also has information and downloadable DSA forms at www.ucas.ac.uk/students/wheretostart/disabledstudents
For general information around higher education, students and potential students living in England and Wales should go to the entry for Disability Rights UK below. Students in Scotland should contact Lead Scotland www.lead.org.uk Tel: 0131 228 9441 and students in N Ireland should go to www.delni.gov.uk/index/funding-support.htm
There is a free Benefits Enquiry line 0800 882 200 (N Ireland 0800 220 674)
Online guides to benefits include:
www.direct.gov.uk/en/disabledpeople/financialsupport/dg_10011925 has a table of DLA rates, and you can fill in or download a DLA form there.
www.benefitsnow.co.uk gives comprehensive information on benefits, and allows you to assess yourself for DLA, ESA and Carer’s Allowance. It also has info on the Disabled Facilities Grant in England, Wales and N Ireland. For Scotland go to www.benefitsnow.co.uk/dfg/scotland.asp
www.benefitsandwork.co.uk An independent subscription site offering tips and tactics for applying for DLA, ESA etc
www.dwp.gov.uk/publications/dwp/dmg click on Volume 10 to be sneaky and read the guide used by the decision makers when awarding DLA
General info and advice
Contact a Family www.cafamily.org.uk/publications.html?scat=39 Helpline: 0808 808 355 has downloadable booklets on ESA, transition, benefits, sex and relationships. Transition guidance covers England, Scotland and Wales. For NI follow ‘In Your Area’ link.
www.turn2us.org.uk another site to help you find out about benefits, grants and other financial help, including managing money. Has an easy to use benefits checker and a grants search section containing the details of hundreds of grant-giving charities (national, regional and local) that may be able to provide financial support and other services.
Disability Law Service www.dls.org.uk Advice line 020 7791 9800 E-mail: email@example.com A charity run by and for disabled people to provide advice and information on the law as regards disability, benefits, employment etc. Their site has range of factsheets and they also provide a casework service, and support at any level of the legal system.
www.direct.gov.uk/en/YoungPeople/Youngdisabledpeople/index.htm govt. website about transition etc
Disability Rights UK www.disabilityrightsuk.org was formed in 2012 through a unification of Disability Alliance, Radar and National Centre for Independent Living. Go to ‘Ways we can help’ for information on benefits, direct payments, independent living, support for carers etc.
Independent Living Advice Line: 0845 026 4748, email: firstname.lastname@example.org
It also supports disabled students, with a student helpline: 0800 328 5050, email: email@example.com and a downloadable guide ‘Into Higher Education’ as well as other information sheets for students.
Although Radar no longer exists as a separate organization, their publications are still available from www.radar-shop.org.uk. As well as the annual Disability Rights Hadbbook, these include the Doing Life Differently series, ‘and a guide to the National Key Scheme, which allows people with disabilities to use over 8000 locked toilets across the UK (you can also order a key from the site).
Transition Information Network www.transitioninfonetwork.org.uk Tel: 020 7843 6006 Email: TIN@ncb.org.uk TIN is an alliance of organisations and individuals working together to improve the experience of disabled young people’s transition to adulthood, and a source of information and good practice standards for disabled young people, families and professionals. Provides information through website, magazine, e-newsletter and seminars. TIN does not provide advice and does not have a helpline.
Inclusion Scotland (IS) www.inclusionscotland.org
Disability Wales www.disabilitywales.org
Centre for Independent Living Belfast www.cilbelfast.org