Parents and families with young people

Parents and families with young people 

These pages give links to sites where you get information and support if you are caring for a child who has limb loss.  There are sections on: 

·        Local information
·        National information – specifically for limb loss and children
·        Discussion groups for parents with limb loss
·        National information  - general for disabled children
·        Holidays
·        Funding
·        Equipment
·        Government websites 


But my child’s not disabled!

You will find that most of the information and support comes under the broad heading of ‘disabled children’ – although you or your child may not want to identify as being disabled because of the negativity associated with it, you may find that it is helpful to access your rights and entitlements for the additional costs you incur because of living with your limb loss.
 

·       
Local information

 Brighton-based ‘Amaze’ is an organisation dedicated to supporting parents and children in Brighton & Hove. They work to empower parents to help their children live fully socially included lives.  They can help with Disability Living Allowance (DLA) claims, produce a newsletter and run a scheme for children in receipt of DLA called Compass that includes organised cinema trips and discounts for swimming and soft play areas. 

The 818 club part of Adventure Unlimited organises events and activities at weekends and during the school holidays for young people aged between 8 and 18 with and without special needs.
 

The Sussex Rehabilitation Centre at Brighton hospital have a doll in the children’s play area who is an amputee and wears a prosthetic limb.  The doll also has a wheelchair and walking bars!  They also have a book ‘Peppermint Moon’ which is a story of a child who becomes an amputee.
 

·       
National information – specifically for limb loss and children 

The Limb Loss Information Centre have reproduced some articles on being a parent of a disabled child.
 They also have links to prosthetics, parenting, coming to terms with congenital limb loss, support organisations, teaching children about limb loss, guides for upper and lower limb deficiencies, counselling, education and parenting for amputees 

Reach
: The association for children with a hand or arm deficiency have a great website and links to a local group in west Sussex.

Steps
: the National Association for Children with lower limb ‘abnormalities’

 ·        Discussion groups for parents with limb loss 

Yahoo discussion group for women amputees or women born without limbs who are pregnant or are becoming new parents

The amputee mums yahoo group is here.  Local amputees Welly O'Brien and Diane Mulligan can also both give support to pregnant amputees.  Email us at sussexamputees@yahoo.com

Also see the Disabled Parents Network website for additional information

·       
National information  - general for disabled children 

Contact a Family
is a UK-wide charity providing support, advice and information for families with disabled children. We offer a range of services to support families including a freephone helpline and a number of offices, staff and volunteers around the UK. We also provide information to professionals and developmental advice to support groups. Most of our information materials can be found on this website, others will need to be ordered. We also work to influence services and have campaigns that aim to improve the quality of life for families with disabled children. 

Face to Face network is a one-to-one befriending service for parents of disabled children.

The Council for Disabled Children (CDC) is a semi-independent council of the National Children’s Bureau, and has a small staff team reporting to its Director. The CDC Council is made up of a wide range of professional, voluntary and statutory organisations, including parent representatives and representatives of disabled people. CDC’s broad based membership and extensive network of contacts provides a unique overview of current issues. It also helps us promote collaborative and partnership working among organisations.

·       
Funding 

3H Fund
Organises subsidised group holidays for disabled children and adults to provide respite for their regular carers. It also provides some grants to families on low income with a disabled dependent.  

The Family Fund
  helps families with severely disabled children to have choices and the opportunity to enjoy ordinary life.  They give grants for things that make life easier and more enjoyable for the disabled child and their family, such as washing machines, driving lessons, hospital visiting costs, computers and holidays.

Keep the Home Fires Burning
(KHFB) helps families with disabled children to improve their heating and insulation.  For information on grants for central heating, boiler sand insulation contact khfb@anchor.org.uk 

·       
Equipment 

Whizz Kids provides information and advice to change the lives of disabled children across the UK, also provide customised mobility equipment.
 

Ability Net
This national charity offers expertise on computing and disability and also supply adapted computer equipment for people with disabilities.    

Action for Kids
Helps disabled young people find more independence and opportunity through providing equipment and support.  

·       
Holidays 

All Go Here
Provides information on hotels, airlines and other services that can be used by anyone, listing only mainstream hotels, and not those targeted towards only people with disabilities.  

Access at last
A directory of accessible hotels around the country, including reviews of those that have been visited.  

Accessible Travel
An exciting world of accessible holidays and travel for wheelchair users, slow walkers, mature travellers their families and friends.  

·       
Government websites

If you have an interest in young children with disabilities,
you'll find all kinds of useful information on this Early Support website. Early Support is a Government programme to improve services for families and children in England - but people everywhere can download and use the materials freely. 

Every Child Matters
– a government website where you can influence your children’s future: Parents, carers and families are the most important influence on outcomes for children and young people.  

Direct Gov 
has information for young disabled which has specific sections on:
· Education and training (disabled people section)
· School and pre-school (disabled people section)
·Special educational needs: a step-by-step approach (education and learning section)
· Further education (disabled people section)
·Higher education (disabled people section)               




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