Benefits
Many rare diseases are life-long conditions and can affect your life in different ways. If it is your loved one who has the rare disease, you may have found that you now spend a substantial part of your week caring for them. Benefits exist to support you with those challenges but accessing them can be time-consuming and confusing to understand. There can be strict criteria and you will need to gather evidence to support your application.
There are a number of benefits and tax credits to which you may be entitled. For example, you may be entitled to Disability Living Allowance (DLA) for your child’s additional needs as well as Carer’s Allowance as their carer. Depending on your income and certain other factors, you may also be able to claim benefits, such as Income Support, Child Tax Credit and Housing Benefit. You may also be able to ask your local authority to reduce your Council Tax if there is a disabled person living in your home.
Applying for benefits
When applying for benefits we suggest that you:
– Prepare a diary of a typical week showing a complete breakdown of care needs;
– Ask your specialist consultant for a letter of support to accompany your claim;
– Ask a regular local healthcare provider such as an OT for a letter of support regarding your or your child’s condition if appropriate.
We can help you understand what is available and guide you through the process of applying. If you’ve already made an application and been turned down, it might be worth talking to one of our Rare Navigator team to see if a reconsideration or new application is possible: enquiries@samebutdifferentcic.org.uk
Disabled Living Allowance (DLA)
DLA is a UK benefit paid to families with a disabled child (aged under 16). It is not means tested and you can use this benefit in the way that works best for your child. You can claim DLA even if your child does not have a diagnosis yet but supporting documentation is required. Decisions are made based upon the amount of care your child needs beyond what is considered normal for a child of similar age. This can present challenges when applying on behalf of an infant or baby.
Not everyone receives the same payment for DLA. There is a daily care component and a mobility component. Your child may be assessed as eligible for one or both. There is also a standard and an enhanced rate, depending on the level of need. If your child is eligible for the enhanced mobility component, it will give you the option of leasing a vehicle through the Motability scheme. Please note, children under 3 years of age are not eligible for the mobility component of DLA, however you can still apply for the care component.
Life is more expensive with a disabled child. There is no need to feel embarrassed or too proud to apply. The payments can help with the additional expenses of having a child with a rare disease and can make life a little more manageable, enabling you to give your child access to vital activities and a good quality of life. Many charities that provide small amounts of funding for equipment or short breaks consider whether the child is in receipt of DLA.
If you receive DLA for your child, you might be able to get extra money from other benefits. DLA does not count as taxable income for tax credits. If you also receive child tax credit payments, you will qualify for an extra payment called the disabled child element. You may also be able to gain exemption from vehicle tax for the vehicle you use to transport your child. If your child qualifies for the enhanced care rate, you might qualify for Carer's Allowance yourself (if you spend at least 35 hours a week caring for them).
Do keep a copy of your answers when you complete the form. In many cases, DLA must be reapplied for every 3 years and it will help you to consider if things have changed.
If your application is not successful, you can ask for a mandatory reconsideration or even take your application to tribunal. Don’t be disheartened if you’re not successful first time.
Parents tell us that they find it hard to fill in the DLA form because it is long and it asks them to really think about the challenges they face every day. This can feel overwhelming. Please do get in touch with our team if your child has a rare condition and our Rare Navigators can give you support you through this process: enquiries@samebutdifferetcic.org.uk
Personal Independence Payment (PIP)
This has replaced the Disability Living Allowance (DLA) for those aged 16-64.
Most children turning 16, who currently claim the DLA, will be asked to claim PIP after their 16th birthday. There are some exemptions and special rules if the child is terminally ill or in hospital.
Like DLA, PIP is made up of two parts. There is a mobility component based on the applicant’s ability to get around and a daily living component based on the applicant’s ability to carry out key activities necessary to participate in daily life.
Depending on their circumstances, the applicant might qualify for one or both. Both components of PIP are paid at either a standard rate or an enhanced rate, depending on the level of needs. Those getting the enhanced rate of the mobility component of PIP can make use of the Motability Scheme. If the daily living component is awarded this can lead to a carer being eligible for Carer’s Allowance.
How will my PIP Claim be assessed?
As well as having to complete a claim form and paper questionnaire over the phone, most people will be asked to attend a face-to-face assessment undertaken by a healthcare professional, who will be working on behalf of the Department of Work and Pensions (DWP).
PIP uses a points-based system to decide whether someone qualifies for the benefit, and if so, at what rate. You receive points depending on the level of difficulty you experience in the following areas:
Preparing food
Eating and drinking
Managing treatment
Washing and bathing
Managing toilet needs
Dressing and undressing
Communicating verbally
Reading
Making decisions about money
Your scores are added together to decide whether you will receive the daily living component. The number of points you score in two more categories are added together to decide if you will receive the mobility component, and at what rate:
Planning and following journeys
Moving around
People tell us that they find it hard to fill in the PIP form because it is long and it asks them to really think about the challenges they face every day. This can feel overwhelming. Please do get in touch with our team if you have a rare condition. Our Rare Navigators can give you support you through this process: enquiries@samebutdifferetcic.org.uk
Are you looking for more direct support, or want to belong to a wider rare disease community?
Our RAREhub and RAREnavigator services can help - in a way that suits you and your family.