Disability Living Allowance (DLA)

DLA is the main benefit for children aged 3 months to 16 years who have a disability in England, Wales and Northern Ireland. In Scotland, DLA has been replaced by the Child Disability Payment (CDP) and children can continue to receive the CDP until they are 18 if they do not wish to transition to the adult equivalent at 16. Further information on the CDP can be found here –  Child Disability Payment | Contact. Both DLA and DCP help parent/carers to meet the extra costs that they might face as a result of their child’s disability.

Most children with WS will qualify for DLA, but not all children with WS will receive the same award. This is because not all children with WS have the same needs and your claim will be based on your child’s disability and the additional care and/or supervision they need in comparison to other children of the same age who don’t have any disability. DLA awards are based on how your child’s condition impacts on their day-to-day life and the evidence you have provided to support your application.

DLA is not means tested and awards vary depending on the severity of their needs. DLA is split into a care component and a mobility component.

Care                                                                  

Lower rate (LRC) – £26.90 per week              

Middle rate (MRC) – £68.10 per week          

Higher rate (HRC) – £101.75 per week

Mobility

Lower (LRM) – £26.90 per week (Age 5+)

Higher (HRM) – £71.00 per week (Age 3+)

Please note that as all babies require a high level of care and supervision, only babies who need a significant amount of additional care or who have differing needs (ie. feeding problems, seizures, frequent hospital appointments) are likely to qualify.

This useful guide explains the scenarios where HRM may be awarded DLA-for-children-with-autism-and-learning-difficulties.pdf (contact.org.uk). HRM can be exchanged for a motability vehicle Motability Scheme | Lease a car, WAV, scooter or wheelchair.

This useful guide by Contact has top tips and looks at the form question by question Tips on completing the Disability Living Allowance form (contact.org.uk).

The following guides give additional information about financial support available to parents of disabled children.

England & Wales: Money-matters-England-and-Wales.pdf (contact.org.uk)

Scotland:Money-matters-Scotland.pdf (contact.org.uk)

If you are in receipt of DLA for your child and are also in receipt of Child Tax Credits, please let the tax credits office know as you will be eligible for the disabled child element of tax credits (£65 per week), plus the severely disabled child credit (£26) if you receive HRC. Similarly, there is a disabled child addition for families in receipt of Universal Credit.

Personal Independence Payment (PIP)

PIP is a benefit to help with the extra costs of disability for adults aged 16 to pension age in England, Wales and Northern Ireland. It replaces Disability Living Allowance (DLA) for children when they turn 16 and is also not means-tested. Adult Disability Payment (ADP) has replaced PIP in Scotland – Adult Disability Payment & disability benefits at 16 | Contact. Many people with WS will qualify for PIP (or ADP). Children already in receipt of DLA will be contacted regarding applying for PIP before or around their 16^th birthday.

Your child (or you if you are their appointee) claim PIP by phoning the PIP claim line on 0800 917 2222 (or 0800 012 1573 in Northern Ireland). Most 16 year olds with WS will be entitled to an appointee – Become an appointee for someone claiming benefits – GOV.UK (www.gov.uk)

When you telephone the PIP claim line, you will need to complete a simple claim form over the telephone relating to your child’s name, contact details and nationality. You will not be asked for detailed information about your child’s care or mobility needs as this is covered in a separate paper questionnaire which will allow you to provide detailed information. The DWP will post the PIP form to you, following your call.

Top Tip – Record your calls! For those undertaking PIP telephone interviews – record the assessment call, then request the assessor’s written report from the DWP so that you can check that the report reflects what was said and all key points are included. If it doesn’t let them know before they make a decision based on an inaccurate report.

Your child will likely be asked to take part in a consultation with a health professional working on behalf of the DWP, either face-to-face, via the telephone or by video link.

If the DWP has invited your son or daughter to claim PIP from DLA, you must do so within 28 days. Their DLA payments will then continue until the DWP makes a decision on their PIP claim. This applies even if their existing DLA award was scheduled to end when they turned 16. If you fail to claim PIP when invited to do so, DLA payments will stop.

Like DLA, PIP has two components – the daily living component and mobility component.

Daily Living                                                     

Standard – £68.10 per week         

Enhanced – £101.75 per week                       

Mobility

Standard – £26.90 per week

Enhanced – £71.00 per week

Enhanced mobility can be exchanged for a Motability vehicle – Motability Scheme | Lease a car, WAV, scooter or wheelchair

Contact have produced an excellent guide on applying for PIP – PIP-guide.pdf (contact.org.uk).

We also have access to the DWP’s marking scheme – please contact enquiries@williams-syndrome.org.uk for more information.

If you/your child are in receipt of PIP and you are also in receipt of Child Tax Credits, please let the tax credits office know as you will be eligible for the disabled child element of tax credits (£65 per week), plus the severely disabled child credit (£26) if Enhanced Care is awarded. Similarly, there is a disabled child addition for families in receipt of Universal Credit.

Carers Allowance

If your child is in receipt of DLA/CDP (either MRC or HRC) or PIP/ADP (daily living – either rate) and you care for them 35 hours a week or more and you earn less than £139 per week (after income tax, NI, half your pension contributions and eligible child care costs) you may also be entitle to Carers Allowance. Useful links –  Carer’s Allowance: Eligibility – GOV.UK (www.gov.uk)and Carer’s Allowance | Contact

Carers Allowance is £76.75 per week.

If you claim other benefits (such as Universal Credits, Income Support and Housing Benefit) you will qualify for the Carer Premium element of these benefits. 

Blue Badge Parking Permit

Some individuals with WS will be entitled to a Blue Badge. Blue Badge disabled parking permits | Contact