The Children's Brain Injury Trust (CBIT) Information
In the first hours following their child's head
injury, most parents find it difficult to know what is happening
to their child. Everyone is in a hurry and technical terms
are used. Even when someone has time to stop and talk, parents
may not understand why they cannot predict how well the child
will recover.
Parents may also feel that no-one understands what they are
going through. Unfortunately, 20,000 children are admitted
to hospital in Britain each year with a head injury. So there
are parents who have had similar experiences.
The Child Brain Injury Trust has been set up to help children
and their families. It has three main aims:
To find out more about the effects of head injury in children.
To pass on to parents and professionals information on the
care of these children.
To support families who feel they do not know where to turn.
The charity is now called the Child Brain Injury Trust instead
of the Child Head Injury Trust and has a new website at www.cbituk.org
which is being rewritten for April 2003. Our contact details
are as follows;
Child Brain Injury Trust
The Radcliffe Infirmary
Woodstock Road
Oxford OX2 6HE
Telephone: 01865 552467
Email: info@cbituk.org
Other Information
Where to get help
Health
Your family doctor will help you with any general medical
problems and may know of other types of help you can get at
home. Health Visitors are attached to the family doctor and
work mainly with children under 5 years, but may also work
with older children with special needs. In particular, if
your child has become incontinent, free nappies can be arranged
by the Health Visitor or a District Nurse. Some areas have
a Continence Advisor.
Benefits
The Department of Social Security will help you with benefit
claims. They have many leaflets about benefits: as a starting
point leaflet FB2 Which Benefit? is useful. For more detailed
leaflets about benefits available to disabled people and their
carers, contact your local Social Security Office or call:
· Freephone Benefit Enquiry Line for people with a
disability: 0800 88 22 00
· For assistance with completing a disability benefit
claim form: 0800 44 11 44.
As a Parent or carer, the benefits you are most likely to
need to know about are: Disability Living Allowance
For people who need help with personal care and supervision
from another person (awarded at 3 different levels): Care
component.
and/or For those who have difficulty getting around (awarded
at 2 different levels): Mobility component
Lower age limits: For Care component, None; for Mobility component,
5 years. NB For children under 16 to claim any rate of the
Care component or the lower rate of the Mobility component,
you must show that they need substantially more attention,
supervision or guidance than a child of their age would normally
need.
Parents of children receiving the higher rate of the Mobility
component can apply to the Motability Scheme, which enables
them to use the allowance to lease or buy a new car, buy a
good used car, or even an electric wheelchair. Motability:
Information Section, Gate House, Westgate, Harlow, Essex CM20
1HR, Tel: 01279 635666
Since a deposit is required for a new vehicle and there are
mileage limits for leasing, it is worth comparing special
deals offered to the disabled by manufacturers. If purchasing
a new vehicle independently that is adapted for carrying a
disabled person, ask your local VAT office about exemption
on both purchase and servicing. With the higher rate of the
Mobility component, there is also exemption from Road Tax.
Orange Badge Scheme
With the higher rate of the Mobility component you will qualify
for an Orange Badge from your local Social Services Department,
giving concessions on parking restrictions. At the lower rate
you may still get one, but the extent of your child's walking
problems will be assessed.
Severe Disablement Allowance
From 16 years, if disability prevents your son/daughter from
working. May be paid even if they are still at school or College:
depends on the number of hours of 'normal' education per week.
Invalid Care Allowance
As a carer for more than 35 hours per week, you may be entitled
to ICA. There are restrictions about how much you can earn.
The Social Fund
Helps people on low incomes by giving grants or loans when
unusual expenses cannot be paid for by the regular income.
Council Tax
If someone in your house (including a child) has a permanent
disability and has to use a wheelchair, or a room has been
adapted for their use, you can apply for the banding of your
house for Council Tax assessment to be reduced to the band
below.
Social Services.
Your local Social Services Department is required by the Children
Act to provide services for children "in need",
which includes children with disabilities. How they assess
children, and their Carers, varies between authorities. Services
for which you may qualify include: grants for special adaptations
to the house, equipment to help you care for your child or
someone to help with that care, and respite care (whether
a sitting service for a few hours or a stay in a special home).
They should also have available information about services
provided by voluntary organisations.
Head Injury Organisations
HEADWAY (The National Head Injuries Association)
4 King Edward Court,
King Edward Street,
Nottingham
NG1 1EW
Tel: 0115 924 0800
www.headway.org.uk
Headway has over 100 support groups throughout the UK and
a growing number of Headway Houses offering day care for head
injured adults and respite for the carers. Booklets about
various aspects of head injury.
H.I.T.S. (Head Injuries Trust for Scotland)
7 Queen's Crescent,
Glasgow
G4 9BW
Tel: 0141 332 6104
Resource Centre for head injury patients and families.
H.I.R.E. (Head Injury Re-Education)
7 King Edward Court,
King Edward Street,
Nottingham,
NG1 1EW
Tel/Fax: 0115 941 0006 Organises study days. Information Packs
on Further Education and Working with Children in Education.
Disability Organisations
RADAR (The Royal Association for Disability and Rehabilitation)
12 City Forum,
250 City Road,
London
EC15 8AF
Tel: 0171 250 3222 Useful publications on many aspects of
disability, including access, holidays, legal matters, sports
and leisure. Especially, "If Only I'd Known That a Year
Ago" (free to disabled people) and the Directory for
Disabled People.
THE DISABLED LIVING FOUNDATION
380-384 Harrow Road,
London
W9 2HU
Tel: 0171 289 6111
Provides information, especially about equipment for use in
the home, but also on other aspects of disability. Can advise
on adaptations to the home. The Association for Continence
Advice is based here.
PHAB (Physically Handicapped and Able Bodied)
12-14 London Road,
Croydon
CR0 2TA
Tel: 0181 667 9443
Network of clubs and projects for leisure activities.
DISABILITY LAW SERVICE (Formerly Network For The Handicapped)
Room 241,
49-51 Bedford Row,
London
WC1R 4LR
Tel: 0171 831 8031/7740
A broad range of legal advice and help is given specifically
for disabled people, their families and carers/enablers.
DISABILITY ALLIANCE (ERA) Education and Research Association
1st Floor East,
Universal House,
88-94 Wentworth Street,
London
E1 7SA
Tel: 0171 247 8776 or, for advice, 0171 247 8763
Produces the Disability Rights Handbook annually which explains
benefits and gives useful addresses.
For further information on Disability organisations,
especially local information, look under Disabled -- Information
and Services in your local Yellow Pages, especially your nearest
Disability Information Service.
Other Organisations
CONTACT A FAMILY
170 Tottenham Court Road
London
W1P 0HA
Tel: 0171 383 3555
National umbrella organisation for groups or individuals who
offer themselves as contacts: concerned with children with
any disability or medical condition. Produces a Directory
of specific conditions, and who to contact.
COUNCIL FOR DISABLED CHILDREN
8 Wakley Street
London
EC1V 7QE
Tel: 0171 843 6000
Subsection of the National Children's Bureau at the same address.
Provides information, promotes campaigning for better services,
helps to educate professionals.
CHILDREN IN SCOTLAND
Special Needs Forum
Princes House
5 Shandwick Place
Edinburgh
EH2 4RG
Tel: 0131 228 8484
Consists of a number of agencies with the aim of giving a
higher profile to major issues affecting children and young
people with special needs, and promoting good practice in
these areas.
IN TOUCH
10 Norman Road
Sale
Cheshire
M33 3DF
Tel: 0161 905 2440
Newsletter about children with special needs. Booklet, Useful
Addresses for Special Needs, is a mine of information about
organisations for children with disabilities, aids and equipment,
education and leisure.
SCOPE (Formerly The Spastics Society)
12 Park Crescent
London
W1N 4EQ
Tel: 0800 626216 (Helpline)
Principal concern people with Cerebral Palsy, but has information
that may be relevant to children with head injuries. Monthly
newsletter, Disability Now. Runs schools.
HEMI-HELP
Tel: 0181 672 3179, 10 am - 1 pm Mon-Fri
Network of families with children with hemiplegia. Most were
born with the condition, but can also help if it is acquired
as the result of a head injury.
MENCAP
117-123 Golden Lane
London
EC1Y 0RT
Tel: 0171 454 0454
Practical help, advice and support for families with a member
with learning disabilities. Local groups.
ENABLE (formerly Scottish Society for the Mentally Handicapped)
6th Floor
7 Buchanan Street
Glasgow
G1 3HL
Tel: 0141 226 4541
Scottish version of the above.
AFASIC (Association for All Speech Impaired Children)
347 Central Markets
Smithfield
London
EC1A 9NH
Tel: 0171 236 8115
Information and support for parents of children with speech
and language difficulties. Newsletter with good coverage of
educational, benefits and legal issues regarding such children.
ENCEPHALITIS SUPPORT GROUP
Pasture House
Normanby
Sinnington
York
YO6 6RH
Tel: 01751 433318
Information and support for families whose children have had
encephalitis. Newsletter, meetings.
CROSSROADS CARE
Care Attendant Scheme
10 Regent Place,
Rugby,
Warks.
CV21 2PN
Tel: 01788 573653
Provides help with care and nursing in the home. Some local
branches are closely linked with Social Services. There may
be a charge.
THE FAMILY FUND
PO Box 50,
York
YO1 2ZX
Tel: 01904 621115
Financed by the government to help families of children with
severe disabilities up to age 16. Grants for such things as
washing machines, holidays, car-hire.
SPOD (The Association to aid Sexual and Personal Relationships
of People with a Disability)
286 Camden Road,
London
N7 0BJ
Tel: 0171 607 8851
Information, counselling and training on sexual and personal
relationships of people with disabilities.
RELATE (Formerly National Marriage Guidance Council)
The local branch will be listed in your telephone directory.
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