Juvenile Huntington’s - getting financial help

Caring for someone with Juvenile Huntington’s can have an impact on your finances, which can feel stressful at times. It may become increasingly difficult for the young person affected, and members of their family who look after them, to work or study. Meeting their care needs can sometimes be costly, too.

There are different forms of financial help available to people living in England and Wales, from the Department of Work and Pensions (DWP), your local council and other sources. It’s important to access all the help you’re entitled to.

Disability benefits

As a parent carer of a disabled child, you can claim benefits on behalf of your child, as they are your dependent.

Under 16

  • Disabled people under the age of 16 should be entitled to a Disability Living Allowance (DLA) for children, if they meet the eligibility requirements.
  • The amount of Disability Living Allowance you receive is based on your care needs and mobility.
  • The amount you receive depends on how Juvenile Huntington’s is affecting your child and impacting on daily life for you as their carer. This is likely to change over time, so they will need to have an initial assessment and regular reviews of their condition.

16 and over

  • From the September after their 16th birthday, you will only be able to get payments for your child as a dependent if they are in full-time education or certain types of training.
  • They may be entitled to claim benefits such as Personal Independence Payment (PIP) in their own right instead.
  • Some people find that the amount of money they receive changes when they move from DLA to PIP.
  • It is also possible that overall, the benefits income you get as a family may reduce once your child is no longer classed as a dependent, as tax credits, child benefit, and any other benefits you get for them will stop.
  • If your child is in full time education or an approved training course, and therefore still classed as your dependent, you can choose to continue to claim benefits for them as part of your family, or they can claim for themselves as a disabled adult. It is a good idea to work out with a specialist benefits advisor which option will leave your family better off.
  • If your child is not able to manage their own benefits, you or someone else close to them can act as their ‘appointee’ to do this for them. If you have already been appointed by the courts to look after their affairs, you won’t have to do anything else.

Every family’s circumstances is different, so it’s a good idea to get detailed advice from an expert benefits advisor to calculate your and your full benefits entitlement. Your local Citizens Advice bureau or Law Centre can often help with this. They can also help with filling in forms and can contact the DWP for you if necessary.

Help with transport

  • The Blue Badge Scheme
    A Blue Badge lets you park in places other drivers can’t, so that you can park closer to places you want to reach. With a Blue Badge you can usually (but not always) park for free. Some private car parks, e.g. at hospitals, may still expect you to pay.
    You can apply for a Blue Badge online.
  • Train travel
    A Disabled person’s railcard costs £20 per year and entitles the bearer and a carer or friend to one third off train tickets.
    In Wales, you can also travel on some train lines for free if you have a Concessionary travel pass (see “Bus travel” below).
  • Motability Scheme
    The mobility element of your child’s DLA or PIP can be used to lease a car, scooter or motorised wheelchair via the Motability Scheme.
  • Bus travel
    Disabled people are usually entitled to free or discounted bus travel in the UK, although the offer and eligibility criteria vary slightly between UK nations. You can find out more information and apply online here: England; Wales.

Help with equipment and adapting your home

  • Disabled Facilities Grant
    If your home needs to be adapted to meet your child’s needs, you may be able to get a Disabled Facilities Grant from your local council to help with the costs. Usually, your occupational therapist will help you figure out what adaptations will work best.A Disabled Facilities Grant won’t affect any benefits you or your child get, and if your child is under 18, your household income or savings will not affect the amount you receive.
  • Council tax reduction
    If your council tax increases as a result of adaptations to your home, for example building an extension, you can apply to your council to have the increase removed as long as the adaptation is as a result of your child’s disability.
  • VAT relief
    People with a long term illness can get certain products, services and pieces of equipment they need without being charged VAT on top of the cost of the items. The types of items covered include certain types of stairlifts, wheelchairs, adjustable beds, alarms, motor vehicles and building work.Your supplier can advise you which items qualify for VAT relief, and will ask you to complete an ‘eligibility declaration’ form.

Financial help for carers

  • Carer’s Allowance
    You may be entitled to a Carer’s Allowance if you care for someone with Juvenile Huntington’s for 35 hours a week or more. Claiming Carer’s Allowance can affect the other benefits that you and the person you care for get, so it’s important to get detailed advice from an expert benefits advisor to find out if you will be better off claiming it. Citizens Advice can help with this.
  • Carer’s Credit
    If you are caring for someone for more than 20 hours a week, Carer’s Credit should ensure that your National Insurance contributions are still paid, just as if you were working during that time. This means your caring role will not affect your future right to a state pension. If you get Carer’s Allowance or Child Benefit for a child under the age of 12, you will automatically get Carer’s Credit. Otherwise, you need to complete a form.
  • Carers’ Assessment
    If you are a parent of a disabled child aged under 18, your family can be assessed by your local authority to find out what your needs are as a family unit, and see how best to support you. This should be a sensitive and detailed assessment that looks at the needs of your disabled child as well as any other children and family members, your family background and culture, and everyone’s views and preferences.The Carers’ Assessment should then form the basis of a care plan that benefits your disabled child and everyone in the family. This might include adaptations to your home, help with specific care activities or respite breaks.

Other grants

A wide range of grants are available, depending on your specific needs and situation.

  • Turn2us offers a simple tool to search for grants that you may be able to apply for.
  • The HDA offers small grants for specific needs. Please contact your local specialist Huntington’s Disease advisor (SHDA) for more information.
  • Sheenam’s Wish is a charity set up by a young woman with Juvenile Huntington’s to give small grants to other young people with the disease for them to so something fun.

While coping with Juvenile Huntington’s can be expensive at times, there are lots of different sources of help available. It’s important to make sure you get all the support that you’re entitled to.

HDA’s specialist adviser on Juvenile Huntington’s, Helen Santini, is happy to help answer any questions you have about financial matters relating to Juvenile Huntington’s. You can reach her on [email protected] or 01279 507656.