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CamRARE Family Resources

Financial support

Bringing up a child with a rare condition often carries a financial burden. Parents may need to reduce their working hours or even stop working in order to care full time for their child. Specialist equipment may be needed to help provide the best care for their child. They made need particular clothing or incur additional travel costs to hospital appointments or need adaptations to vehicles . In recognition of this, the government offers financial support in various ways to support parents looking after children with disabilities.  

Disabled Living Allowance (DLA)

This is arguably the most important and difficult benefit to apply for, but it is also a gateway to other support. After receiving DLA funding, getting a blue badge, an EHCP (Educational health care plan), and other financial support is easier. DLA can be applied before your child has a diagnosis.

How do I apply?

The application is a 40-page form with extra pages of material. If this is your first time filling it out, it is strongly recommended that you seek help using the links below, as there are many common mistakes people make the first time around that means they receive less or no funding. Cerebra is a charity that offers a free PDF breaking down the questions step by step, including common mistakes, see links below.

How much is DLA?
Maximum £172.75 per week made up of mobility and care components.

Tips from parents in the Unique Feet community

“DLA form was emotionally draining. It’s important to take breaks”,
“keep a photocopy is case you need to appeal and for when you reapply.”
“Medical professionals do not read DLA, you need to explain in plain English the problems you have and not rely on medical terms or a diagnosis.”
“look at how the doctors describe the condition from clinic letters.”
“My main advice is you have to focus on what your child needs on their worst day.”

Apply and re-applying for DLA
Most children are given DLA for a specific number of years. It’s important to make a note of when DLA is going to expire. You should receive a letter asking you to reapply, but if you don’t, contact them four months before it expires and ask for a renewal pack.  Remember that a renewal is treated as a new claim, so you must provide just as detailed information as you did the first time.

Useful links when applying for DSA




Child benefit

Child benefit is £24 for the oldest child and £15.90 others per week.

If your child is disabled, you receive the normal child benefit. There is no extra money for a disabled child, but it is still good to have it.

Carer allowance

Carer allowance is £76.75 a week.

If you spend at least 35 hours a week as a carer and you don’t personally earn more than £123 a week. You may be entitled to a carer allowance depending on your DLA status,

Personal Independence Payments

Personal Independence Payments are £172.75 a week maximum.

At the age of 16, DLA stops, and you can instead apply for personal independence payments.

Disabled Facilities Grant

The disabled facilities grant is a government grant of up to £30,000 that is used to pay for any home improvements to help a disabled child. This includes things like widening doors, improving garden access or even extensions to the house if needed by the child. The grant is NOT dependent on parental income so no matter your financial situation, you may be eligible once referred by an occupational therapist.


Short breaks funding

Children who receive higher rates of DLA or receive services from the children’s disability social care may be entitled to funding for activities through the short breaks fund.

Short breaks fund is a government fund supplied by the Cambridgeshire council that gives money to children with disabilities to access activities that provide their main carer with a break.

It can cover.

  • Care at home so their main carer can have a break.
  • Day care
  • Residential breaks at special units or hospices
  • Family link scheme where children stays with a family member on a regular basis

For examples of activities see our activities page


Help for lower income families

If you are in a low-income bracket you may be entitled to

  • Free school meals
  • Discount energy and water bills depending on the provider
  • Council tax discount
  • Grant from the Family Fund
  • Universal credit
  • Support for mortgage interest
  • Cost of living support payment