Being autistic or looking after an autistic person may entitle you to benefits. There are a few different benefits that you can apply for, all of these are means-tested, whether that be financial or needs-based, and involve some form of eligibility test. En-fold provides help applying for benefits; you can find more information about this on our En-Fold services page.
Disability benefits are designed to support the individual's needs and allow them to afford any carer or equipment they need to live their life. Applying for benefits can be confusing and overwhelming; we have added links to organisations, as well as En-Fold that can offer guidance and support.
Disability Living Allowance is a benefit for children (under 16), for adults, DLA is being replaced by Personal Independence Payment; for more information see the PIP section. DLA is to help with the extra support they may need if they have mobility problems or require more care than a child the same age without any disabilities.
The DLA rate is between £23.60 and £151.40 per week, depending on the level of need and this is a non-means-tested benefit that isn't decided based on household income but on the child's needs. It comprises of two components; care and mobility and is paid every 4 weeks.
The DLA form is long as it looks at all the things your child struggles with. We suggest always going through this form with someone; as caregivers, you can easily forget the adaptations we have made to enrich the lives of our children. Having an objective conversation as you work through it can be invaluable and ensure that you apply for all the entitled support. The more evidence, reports and letters from professionals you can include, the more chance you will have of success.
"Working with En-fold for our 2 children who are on the ASD/ADHD pathway informed us we were entitled to apply for DLA for both girls. Diane provided us 2 sessions via zoom to support us with our DLA forms from how to apply /obtain the forms, to helping us identify the things we do and use on a daily basis to support our girls additional needs that we perhaps would of missed, or take for granted such as our visual aids, schedules, calm down toolkits being aids and adaptions." - Rachel Bott, Parent
Remember, just because autism is a hidden disability, it is still very real. Things like visual aids, sensory circuits and decompression breaks are all aids and adaptations, in the same way, a wheelchair and feeding tube might be for someone with a physical disability.
In the event of being turned down, or given a rate lower than you would expect on your initial application for DLA, you will have the right to request a mandatory reconsideration. A senior decision-maker in the department relooks at the decision and the evidence provided and can overturn the previous outcome and award at a higher level. If this is unsuccessful, you will have the right to appeal to the court, which will be the final decision.
"I just wanted to say thank you so much for your help recently and let you know we've received confirmation that our DLA application has been successful. Your support and help has been invaluable, we will be able to afford any OT therapy that will help our daughter. I'm so happy, that little bit of extra help makes all the difference."
Practical support and signposting individually
tailored to the family’s needs
Personal Independence Payment is a disability benefit for people from the age of 16 to the state pension age and has a long-term illness or disability. PIP is the replacement benefit for DLA for adults; more information on the change of benefits is on the UK Government website.
PIP is another non-means-tested benefit, so the amount of money depends on your illness or disability and the impact on your life, not the amount of money you earn. Before being rewarded PIP, you are assessed by a health professional and your application is regularly reviewed.In the same way, as DLA can be a challenge emotionally to complete, so can the PIP forms. With PIP, there is almost always an assessment interview appointment too; you can request that this takes place in your own home, though there is no guarantee. En-fold, along with several other organisations can provide support for PIP applications, more information on the organisations can be found at the links below.
The criteria for PIP is different from DLA, you must have a health condition or disability that has impacted your daily living for at least 3 months, and this difficulty will continue for at least 9 months. There are different rules if you are terminally ill or served in the Armed Forces. The website linked below is a useful tool to give you an idea as to the areas where you could be allocated points with an estimation of the amount/rate of PIP you may be entitled too.
You can claim PIP via telephone or by post (this takes longer), a form will be sent to you called 'How your disability affects you' you have 28 days from the form being sent out to complete and send back. Once received the Department of Work and Pensions will start processing the form. You can be asked for more information during this time if they DWP deem it necessary when processing your claim. As part of our Autism Support Service En-Fold offers assistance in completing this form.
Once a decision has been made, you will receive a letter stating whether your claim was successful or not. If you claim was successful a breakdown into where points were awarded, the amount you will receive and if you qualify for Motability.
In the event of being turned down, or given a rate lower than you would expect on your initial application for PIP, you will have the right to request a mandatory reconsideration. Some organisations that help you complete the form can support you through this process too. A Mandatory Reconsideration is when a senior decision-maker in the department relooks at the decision and the evidence provided and can overturn the previous outcome and award at a higher level. If this is unsuccessful, you will have the right to appeal to the court, which will be the final decision, however, with a 76% success rate to the PIP applicant the odds are in your favour.
Carer's Allowance is a non-means-tested benefit for those who provide regular care to someone who has a disability. To be eligible, you must spend at least 35 hours a week providing regular care to someone who has a disability, who is the recipient of a relevant benefit (e.g. DLA and PIP).
Carers Allowance is £67.25 per week.You can't claim CA if you are a full-time student or you earn more the threshold stated by the government but can qualify whether you are in or out of work. If you are working, can't make more than £128 per week. CA can affect other benefits as it counts towards your income.
© 2021 En-Fold. All Rights Reserved.
We are registered as a charity in England and Wales (1180998)
En-Fold, PO BOX 7190, Kettering, Northamptonshire. NN16 6RF
Disclaimer: En-Fold does not endorse treatments, interventions and therapies but lists them so people can make informed choice. This site is for information purposes only and is a starting point for readers to look into options that may fit or resonate. Remember, therapies for autism, like any condition, should be discussed with a trusted medical practitioner or certified therapist before use. All information, data and material contained, presented or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of En-Fold, or as providing legal or medical advice. All treatment decisions should be made by the individual in consultation with a health care provider. Case studies provided are done so in good faith, and based on the personal experience of the individual submitting them. En-Fold are in no way endorsing the establishments that are mentioned but offering peer reviews to inform readers.
There is no definitive test for autism, so the assessment relies on questions and observations. As a part of the Northamptonshire All Age Autism Strategy, these pathways are due to change to make the process of an autism diagnosis easier for everyone.