Is there financial support for people with dystonia? Expand Yes. If you or someone you care for are unable to work or have other difficulties or needs because of your dystonia you may be eligible for support. The type and level of support will depend on your personal circumstances.
What are the main types of financial support for people with dystonia? Expand Universal CreditYou may be able to get it if you are on a low income or out of work. Personal Independence Payment (PIP)Can help you with some of the extra costs if you have a long-term ill-health or disability. Disability Living Allowance (DLA)Support to help with the extra costs of looking after a child under 16 who has additional needs. Disabled Students' Allowance (DSA)Support to cover study-related costs incurred because of a mental health problem, long term illness or any other disability. Access to WorkCan help cover costs relating to your work that your employer does not cover.
How do I find out if my dystonia makes me eligible for benefits and/or other help? Expand It will depend on your personal circumstances. If you or someone you care for are unable to work or have other difficulties or needs because of your dystonia, we recommend contacting your local Citizens Advice Bureau (CAB) for advice.
Where can I find out more about Universal Credit and how to apply? Expand We recommend Disability Rights UK, a charity led by people with diverse experiences of disability and health conditions from across different communities. They have a helpful overview.
Where can I find out more about Personal Independence Payment (PIP) and how to apply? Expand You can watch our 'Reach Out, Reach All' webinar with The Brain Charity 'Understanding Personal Independence Payment'. We also recommend lots of other great organisations that have some very helpful information: Disability Rights UK's free guide on PIP is very useful. It explains what happens if you are on Disability Living Allowance (DLA), the qualification criteria for PIP including the new points-based assessment, and step by step instructions on how to claim and complete the form. Citizens Advice Bureau has useful online advice about filling in your PIP assessment form, including advice for each question, for those in: England Wales Scope has helpful online advice about how to prepare for a PIP application and what you might need to do in anticipation. The government have a useful overview of PIP.
Where can I find out more about Disability Living Allowance (DLA) and how to apply? Expand We recommend Contact, a charity who work with families with disabled children across the UK. They have a lot of detailed information and may be able to put you in touch with a local helpline to assist with an application. If you have a disabled child (even if you are still waiting for a diagnosis) you may be eligible to claim Disability Living Allowance (DLA). Contact have created 3 short films that talk you through what DLA is and how to apply. What is DLA for children? More about DLA for your child Ten tips for filling in the DLA form for your child
Where can I find out more about Disabled Students' Allowance (DSA) and how to apply? Expand We recommend Disability Rights UK, a charity led by people with diverse experiences of disability and health conditions from across different communities. They have lots of great information and have a Disabled Students Helpline - 0330 995 0414.
Where can I find out more about Access to Work and how to apply? Expand We recommend Disability Rights UK, a charity led by people with diverse experiences of disability and health conditions from across different communities. They have a helpful overview.
Can you help me with my application for benefits? Expand We can't directly, but we work with some great organisations that do! Disability Rights UKA charity led by people with diverse experiences of disability and health conditions from across different communities. The charity provides advice and information about all aspects of independent living, access to work and education. They run a number of helplines that may be able to offer you advice. The Brain CharityA charity based in Liverpool, offers emotional support practical help and social activities to anyone with a neurological condition and to their family, friends and carers. They also operate a national welfare benefits service which can help support you with an application.
I'm having problems with my PIP benefit application, what can I do? Expand We can't help directly, but we work with some great organisations that do! Disability Rights UKA charity led by people with diverse experiences of disability and health conditions from across different communities. The charity provides advice and information about all aspects of independent living, access to work and education. They run a number of helplines that may be able to offer you advice. The Brain CharityA charity based in Liverpool, offers emotional support practical help and social activities to anyone with a neurological condition and to their family, friends and carers. They also operate a national welfare benefits service which can help support you with an application.
My application for PIP was turned down, what can I do? Expand It is important not to give up if this happens as often these decisions are reversed on appeal. We recommend you: ask for a 'Mandatory Reconsideration' take advice from your local Citizens Advice service, Disability Rights UK, or The Brain Charity if necessary, gather more evidence to support your case There is also more detailed information available on the process from Citizens Advice.
Do I need to tell my employer about my dystonia? Expand Depending on the type of work you do you might need to check your employee handbook or speak to HR to know whether you are obligated to inform them about your medical condition. It may be helpful to speak to your employer about any reasonable adjustments that might make it easier for you to work with your dystonia or get additional help from 'Access to Work' (there is a different system in Northern Ireland). Under the Equality Act 2010 it is against the law for an employer to discriminate against an employee because of a disability. We would encourage all employers to do what they can to support an employee with dystonia.
Can I drive with dystonia? Expand If you drive, it’s a legal requirement to tell the Driver and Vehicle Licensing Agency (DVLA), (Driver & Vehicle Agency (DVA) in Northern Ireland), if you have any form of dystonia that may affect your ability to drive safely. Having dystonia doesn’t necessarily mean you will have to stop driving, but you may need a medical or driving assessment. You must notify them if you have some specific types of dystonia e.g. blepharospasm or myoclonus dystonia. The full list is available online. Other types of dystonia are a bit more of a grey area as the DVLA and DVA have chronic neurological conditions listed but have not specified dystonia. We therefore recommend it is best to notify them regardless of which type of dystonia you have.
Do I need to update my insurance? Expand It is a legal requirement to update insurance companies if you have a diagnosis. Having dystonia might affect any insurance policies you have. If you drive, you must tell your car insurance company. Other insurance such as travel or medical insurance can be affected too.
Is my child eligible for additional support in school? Expand This will depend on a few factors, including their age and educational needs. If you think your child may have special educational needs, you need to contact the Special Educational Needs (SEN) co-ordinator, or 'SENCO' in your child’s school or nursery or contact your local council if your child is not in a school or nursery.
Can you help me with medical fees or other costs? Expand Dystonia UK cannot assist with medical fees or other costs. You could use the following online search terms to find possible charities or funders: Assistance with medical fees (+ your geographical area, e.g. Bristol) Medical fees charity support (+ your geographical area) Help with healthcare costs (+ your geographical area)
Does having dystonia categorise me as disabled? Expand Having dystonia doesn’t automatically mean you consider yourself to be disabled. It depends on how much your dystonia affects your ability to carry out normal day-to-day tasks and quality of life. Some find they can manage well living with dystonia, while others find the condition significantly impacts their life and therefore may consider themselves to be disabled. There is no single definition of disability in use in the UK, however, if you’d like to find out more about the term we recommend starting here: Citizens Advice have some helpful guidance on the topic. Disability Rights UK, a charity led by people with diverse experiences of disability and health conditions from across different communities have a helpful overview. The UK Government website also has some guidance.