Welfare and Education

Managing your child’s welfare can be a huge challenge for those with DBA, this section of our website aims to inform you of any assistance that may be available to you and also to make sure you are able to get the most out of the education system so your child has the best opportunities to learn in school.

If you have any further questions not answered below, please contact our welfare and education representative Helen Till at – helen.till@diamondblackfan.org.uk

Welfare

If you receive any level of DLA ensure you always inform the Tax Credits department (update them if your rate is changed).  If you make any personal pension contributions (not a company pension) the value of these can be deducted from your income when calculating tax credits.

Inform your employer if your child receives DLA.  As the parent of a disabled child you are entitled to unpaid leave of 18 weeks per child to be taken upto the age of 18 years, all parents are entitled to this, but parents of disabled children can take this on an individual day basis (standard parental leave has to be taken in week blocks), allowing you to attend hospital appointments, school visits etc.  This leave does not have to be taken for anything specifically relating to you child’s care and can be just to spend more time with them.  Check with your employer to see if they have a compassionate leave policy, where certain leave can be paid.

https://www.gov.uk/parental-leave/overview

If you are in receipt of DLA for your child at middle or high rate care you may also be eligible for Carers Allowance

https://www.gov.uk/carers-allowance/overview

Please note that the earning threshold of £110 a week is actually calculated as a monthly figure of £476, so if your week pay varies, as long as the monthly figure comes under the second figure you can be eligible.

Please also note that any personal pension contributions (not a company scheme) can also be deducted (50% of your monthly contribution) from your monthly income figure when calculating your eligibility.  Carers Allowance is a taxable benefit and does have to be declared on your tax credits application.

Blue Badge

If you receive high rate mobility you will automatically be entitled to a Blue Badge parking permit.  Some local authorities issue Blue Badges on the basis of bulky equipment required for your child’s care over the age of three.  This bulky equipment does include feeding pumps and the larger desferal pumps.  Most authorities will issue under threes a Blue Badge for bulky equipment.

To check on your individual areas https://bluebadge.direct.gov.uk/directgovapply.html

Charities/Grants

If you are in receipt of Carers Allowance check with you local authority for Carers grants for help towards purchasing items that help support your caring role (washing machines, fridges etc)

http://www.carersuk.org/help-and-advice/get-resources/carers-rights-guide

Suggested charities that help with items/experiences

http://www.familyfund.org.uk/

http://raysofsunshine.org.uk/

http://www.whenyouwishuponastar.org.uk/

http://www.believeinmagic.co.uk/

Don’t forget about siblings if you have a poorly child, make sure school is aware of your family and the daily issues they face.  Quite often schools have additional emotional support for children with poorly siblings, some even run their own Young Carers groups.

There are numerous Young Carers Groups that support children and young adults that perform. Caring role at home.

http://www.carers.org/what-young-carer?gclid=CIHy2ImbjcgCFQ2eGwodY8MGqA

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