Benefits / rights


People with dystonia and their carers may be entitled to one or more of the following (click for more information):

This informartion was last updated at June 2010 and is not guaranteed to be currently accurate. Always check with your local Citizen's Advice Bureau or other qualified benefits advisor before taking action.

If you want to read a PDF of this page click here.



•    DLA is a tax-free benefit for people who are under 65 when they make their claim, who need help with personal care and/or have mobility difficulties because they are physically or mentally disabled.

•    If you are 65 or over you cannot begin a claim for DLA, however, you may be able to claim Attendance Allowance which is a similar benefit

•    DLA is paid at different rates depending on how your disability affects you and whether you have mobility and/or care needs see  then click on disabled people and then go to financial support

•    DLA has five rates of payment based on two components :

  • A care component - if you need help looking
    after yourself or supervision to keep you safe
  • A mobility component – if you can’t walk or find it
    very hard to walk, or you need help getting around

Some people will be entitled to receive just one component; others may get both.

•    You can claim DLA for an ill or disabled child

•    Disability Benefits Helpline – for DLA and AA
08457 123 456 Monday to Friday 7.30am to 6.30 pm

•    Eligibility for DLA is a legal question, not a matter for medical opinion although medical evidence plays an important part in the application process
•    If you have had your health problems for at least three  months and are likely to last at least a further six months. You could be eligible for DLA.

•    If your health problems have not yet lasted 3 months, you can still  make a claim, however payment will only begin from the date when they have lasted three months

•    You can claim DLA on either physical and mental health grounds or a combination of the two.


You can claim DLA even if :

•    You are working
•    Your partner works
•    You are a student
•    You have savings
•    You have not paid any national insurance contributions
•    You live alone and no-one is providing care for you
•    You already have someone – like a partner – providing care for you
•    You have been refused DLA previously
•    You are getting other benefits


•    Claims that are detailed, accurate and well supported with evidence are more likely to be approved
•    If you are refused, then a tribunal that reviews your original claim is more likely to grant an appeal, because it is detailed, accurate and well supported
•    Getting professional advice, and help in completing the DLA claim form is important unless you consider yourself to be an expert !
•    It is essential to get as much supporting evidence as you can, i.e. reports from consultants, etc.
•    When completing each question be sure to give as much detail as possible as to how the condition affects your life
•    Include information leaflets from the Dystonia Society website about your particular form of dystonia
•    Keep a diary for a week to demonstrate how the dystonia affects you on a daily basis and attach it with your claim
•    Give details of what help you need on a daily basis


No guarantee that when you apply for DLA you will have a
medical, however, if you do – remember :

•    If you are asked to take a medical and refuse your application will be turned down automatically
•    The majority of the private healthcare doctors who undertake the medicals do not have any knowledge of dystonia therefore it is always advisable to have a copy of our relevant information leaflets to give to them
•    Ask your neurologist/consultant to give you a medical report detailing the health implications and medication you are prescribed for your form of dystonia
•    Accentuate the bad days
•    Take a video of yourself having a bad day to show as evidence
•    When answering questions stick to the specifics.
•    Keep a diary for a week showing exactly how the dystonia affects your everyday life to give to the doctor
•    Have somebody with you so they can see fair play or simply to give you moral support


•    You can either represent yourself at a tribunal or get professional help
•    50% of all appeal tribunals for DLA have a positive outcome
•    70% of oral hearings are successful if you attend with a representative
•    ‘Appealing against a disability living allowance decision’ available from




Attendance allowance is a tax-free benefit for people aged 65 or over who need someone to help look after them because they are physically or mentally disabled.

You may get attendance allowance if :

•    You have a physical disability (including sensory disability, such as blindness), a mental disability (including learning difficulties), or both.
•    Your disability is severe enough for you to need help caring for yourself or someone to supervise you, for your own or someone else’s safety.
•    You are aged 65 or over when you claim.

Normally you must have had these care or supervision needs for at least six months.  However if you are terminally ill there are special rules for claiming the benefit.

If you are under 65 you may be able to get Disability Living Allowance.

Attendance Allowance is not usually affected by any savings or income you may have.

You will not usually need a medical examination when you claim for Attendance Allowance, but sometimes it is necessary in order to assess how your condition affects you.

There are two rates of AA depending on how your disability affects you :

The lower rate, if you need help with personal care frequently or supervision continually throughout the day only, help with personal care or someone to watch over you during the night only, or someone with you when you are on dialysis.
The higher rate, if you frequently need help with personal care, or someone to supervise you continually throughout the day and also personal care or someone to watch over you during the night.

You can get AA even if no one is actually giving you the care you need – even if you live alone.

If you start to get AA it might increase the amount of other benefits or credits you are entitled to.  You may get an extra amount for severe disability with Housing Benefit, Council Tax Benefit or Pension Credit.

AA is normally ignored as income for working out these income-related benefits and credit.



Carer’s Allowance is a taxable benefit to help 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 able to get Carer’s Allowance if you are aged 16 or over and spend at least 35 hours a week caring for a person who gets either :

•    Attendance Allowance
•    Disability Living Allowance at the middle or highest rate for care
•    Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
•    Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension

You cannot get  Carer’s Allowance if you are in full-time education with 21 hours or more a week of supervised study or earn more than £100 a week after certain deductions have been made – for example Income Tax.

Claiming Carer’s Allowance may affect any other benefits, allowances, pensions and entitlements you, or the person you care for, are receiving.



The direct payments scheme is a UK Government initiative in the field of Social Services that gives users money directly to pay for their own care, rather than the traditional route of a Local Government Authority providing care for them.

Direct payments are seen as making an important contribution to the independence, well being and quality of life of people with disabilities.  When introduced, they were seen as a victory for the rights of disabled people.

Further information is available from the Department of Health website.



If you cannot work because of illness or disability which started before 27th October 2008, you may be able to get Incapacity Benefit.  This is a weekly payment for people who become incapable of work while under State Pension age.

For the moment, if you are claiming incapacity benefit or income support on grounds of disability, you still have to satisfy the older personal capability assessment test rather than the new ESA test.

However, at some point between October 2010 and March 2014 you will be reassessed under the new Work Capability Assessment instead.  If you are found to have a limited capability for work in this assessment, you will be moved onto ESA.


You may be able to claim Incapacity Benefit (IB) if you were under State Pension when you became sick and any of the following apply to you :
•    Your statutory sick pay has ended, or you cannot get it
•    You are self employed or unemployed
•    You have been getting statutory Maternity Pay (SMP) and have not gone back to work for your employer because you are incapable of work

You must also have been :
•    Paying National Insurance contributions
•    Unable to work due to sickness or disability for at least four days in a row (including weekends and public holidays)
•    Unable to work for two or more days out of seven consecutive days
•    Getting special medical treatment

Or you must :
•    Be aged between 16 and 20 years (or under 25 if you were in education or training at least three months immediately before turning 20)
•    Have been too ill to work because of sickness or disability for at least 28 weeks
•    Have been too ill to work before you turned 20 (or 25 if you were in education or training at least three months immediately before turning 20)


You can claim IB by telephone or textphone.  An adviser at the contact centre will go through the application with you and fill in the form.  You will not have to fill in any forms yourself.

The contact centre is open Monday to Friday from 8am to 6pm
•    Telephone 0800 055 6688
•    Textphone 0800 023 4888

You can also claim online via the Department for Work and Pensions’ Benefits online service.
You can download the claim form yourself, complete it, send the printed version to Jobcentre Plus if you prefer.

Benefits online service
Find your local Jobcentre Plus office
Download Incapacity Benefit claim form (PDF document, 369K)
Help with PDF files

The IB50 questionnaire should be completed in as much detail as possible and enclosing supporting evidence can increase the chances of your being found incapable of work without having to have a medical.
When you make a claim for IB you have to complete a questionnaire about how your disability or illness affects your ability to complete everyday tasks.  Your own doctor may be asked to provide a medical report.

When you make a claim for IB you will usually have a Personal Capability Assessment (PCA), unless you have a severe disability or illness that falls into an exempt category.  The PCA may involve a medical examination if more information is needed about your condition before your claim can be processed.

When you complete the first IB50 questionnaire, you will usually be asked to get a certificate called a Med4 from your GP.  Although it’s only a very short certificate, what your GP writes on it can make a big difference to your incapacity benefit claim.  It can also affect whether you need to have a medical and whether you can be found exempt from the Personal Capability Assessment (PCA).

Your gp may also be sent a form IB 113 to complete if the Department of Work and Pensions think you may be exempt from the Personal Capability Assessment.

If you receive IB you may be able to do some types of work.  This is called Permitted Work.  If you earn money while you get IB, this could affect income-related benefits.



Employment and Support Allowance (ESA) was introduced on 27th October 2008.It has replaced Incapacity Benefit for anyone making a new claim after that date. If you already receive Incapacity Benefit you will continue to receive it.  It is intended that recipients move to the new benefit between 2010 and 2014.

ESA helps people with an illness or disability to move into work. For new customers, it has replaced Incapacity Benefit and Income Support paid because of an illness or disability.
While you are getting the allowance people will get the following service :

•    Personalised support and financial help
•    Access to a specially trained personal adviser
•    Access to a wide range of other services designed                                                                                                                                                                                                                                                                        to help people move into suitable work

If a person’s illness or disability severely affects their ability to work, the allowance can provide extra financial support.

To make a claim :

•    Phone 0800 055 6688
•    Textphone 0800 023 4888

Monday to Friday 8am to 6pm

You can’t get ESA if you have reached State Pension age.  This is currently 60 for women and 65 for men.  Men aged 60 to 65 may be entitled to Pension Credit and receive contribution-based Employment and Support Allowance



The WCA  is a key part of employment support allowance (ESA).  The assessment will be carried out by a health care professional working on behalf of the Department for Work and Pensions.
It is intended to :

•    Find out whether you have ‘limited capability for work’ and stay on ESA
•    Find out whether you have a limited capability for ‘work-related activity’ and need to be placed in the support group
•    Carry out a ‘work-focussed health-related assessment’ if you are placed in the work related activity group
•    The ‘work-focussed interview’ for those applicants who are placed in the work-related activity group and who are required to attend six of these interviews. 
At interview an action plan will be drawn up with a view to getting you back into work.  Failure to attend or participate in these interviews will result in sanctions being applied to benefits.

For more details of medical tests for ESA visit or or and click on disabled people financial support.

The physical descriptors in the limited capability for work test are grouped into 11 different types of activity :

Walking                                      Standing and sitting
Bending or kneeling                 Reaching
Picking up & moving things     Manual dexterity
Speech                                        Hearing   
Vision                                         Continence
Remaining conscious

The mental descriptors in the limited capability for work test are grouped into sets of activities under the following 10 headings :

Learning or comprehension in the completion of tasks
Awareness of hazard
Memory and concentration
Execution of tasks
Initiating and sustaining personal action
Coping with change
Getting about
Propriety of behaviour with other people
Dealing with other people

If you score 15 in any one activity, you automatically pass the test.  If your score is less than 15, it can be added to the scores you pick up from any of the other types of activity (in both the physical and the mental parts of the test).  If your total score reaches 15, you pass the test.


This test is used to determine whether you are placed in the support group of claimants or the work-related activity group.
Which group you are placed in will determine both the level of ESA that you will receive and the responsibilities you will need to meet in order to retain the benefit.

The descriptors for this test are grouped together under the following 11 activity headings :

Walking                                            Rising from sitting
Picking up and moving things       Reaching
Manual dexterity                              Continence
Maintaining personal hygiene       Eating and drinking
Personal action                                Communication
Learning or comprehension in the completion of tasks