UK Help and Benefits
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For those of you who live in the UK, there are a number of benefits you may be able to take advantage of to help with the day to day caring of your child.  Many of these can be found in the Disability Rights Handbook, published by:

Disability Alliance ERA
Universal House
88-94 Wentworth Street
London E1 7SA

This organisation also produces a smaller cheaper booklet Benefits for disabled children

The following is a list of benefits generally applicable to families with Lissencephaly.  Follow the links to find out more.

Disability Living Allowance (DLA)

The Department of Social Security has a three tiered payment scheme for those with disabilities.  

Mobility Component of DLA

The Disability Living Allowance has an additional  Mobility Component that can be paid if your child has problems with walking, which generally applies to children with Lissencephaly. From April 2001 the Mobility Component may be applied for for any child over the age of 3 years (this has recently been improved from 5 years old).  These payments can be used however you please, but there is the Motability scheme which is used in conjunction with the Mobility Component to allow you to buy or hire a vehicle. To find out more visit the Motability Website.

Invalid Care Allowance (ICA)

As a carer of your child, you are eligible to Invalid Care Allowance, a weekly payment, to help pay for your time as a carer.

The Family Fund

The Family Fund is a registered charity covering the whole of the UK and is funded by the national governments of England, Northern Ireland, Scotland and Wales.  The Family Fund is working towards an inclusive society where families with severely disabled or seriously ill children have choices and the opportunity to enjoy ordinary life by :
- providing timely grants to families with severely disabled or seriously ill children, based on families views and needs
- sharing information and evidence about families with severely disabled children to influence policies and services

AA/RAC reduced subscription rate

The AA (and probably the RAC, although I can't find a link for this) offer reduced rates to those that hold an Blue Badge.

Disabled Parking ('Blue Badge')

For any child above 2 years old you should be able to obtain an Disabled Parking badge for your car allowing special parking rights (free parking in many car parks and parking on single and double yellow lines for limited periods).  Contact the Social Services Department at your County Council for application forms.

Council Tax Disability Relief

You will probably be able to claim a reduction on your Council Tax.  Contact the Council Tax Department at your local council.

Special Building Work - VAT Exemption

If you need an extension or modification to your house because of your child's needs you may be able to get the VAT removed from the bill.

Free Nappies/Incontinence Pads

In some regions once your child is 3 or 4 years old he/she is entitled to free nappies for life.  This can be extended to cover protective pants, liners, disposable draw-sheets etc. To find out more contact your health visitor or community nurse.

Home Responsibilities Protection

Home Responsibilities Protection is intended to protect the basic retirement pension of men and women whose working patterns do not enable them to establish qualifying years for pension purposes because of caring responsibilities at home.  Check out page 9 in your Child Benefit book or phone local Benefits Agency for form CF411.  Anyone getting Child Benefit is entitled.

Help from British Gas

Get help from British gas under the 'here to HELP' scheme.

And just in case.........

You probably know about these, you should be entitled to:

• physiotherapy from the NHS;

• speech therapy from the NHS to help with oral feeding and any speech development;

• occupational therapy from the NHS;

• free equipment from the NHS or local authority, such as chairs and equipment for physiotherapy, special shoes/splints;

Also

• take advantage of your local hospice, see if they are able to offer you respite or provide access to any facilities they may have;

• some areas have groups that offer free help for families with disabled children such as baby sitting, house help etc.  Look in the Yellow pages to see if there is anything near you;

• find the local toy library (which may be attached to your local paediatric/child development department at the local hospital) - this is an excellent way of finding toys that your child may really benefit from;

• discounted or free seats on flights.  Try writing to Richard Branson at Virgin Atlantic explaining about your child and see what happens!

Is there anything else that should be here?

If you are currently taking advantage of any benefits or help not included above please let me know.

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