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Our Syndrome. Your Information.

Our best hope for finding new treatments and raising awareness is your participation in JS-LIFE, the JSRDF patient-centered registry.

Whether you are affected, a caregiver, or related to someone who is or was affected, your information* could be the key. Please take a few moments to answer a few questions today.
*only one survey is necessary per affected individual


 

Joubert Syndrome UK

 



 

Benefits & Services

An alphabetical list of all Benefits and Services, click the links below to see each catagory.



Blue Badge Scheme | Print |

Blue Badge Scheme

The blue badge is a parking permit that allows a range of parking concessions.

You can apply for the badge from age 2 and automatically qualify if you recieve the higher rate mobilty component of D.L.A. or registerd blind.

You may also qualify if you have a permanent disability that makes you unable to walk or which makes walking very difficult.

Contact you Local Council for an application form. 

 
Carers Allowance | Print |
Carers Allowance
You may be able to get Carers Allowance if you are aged 16 or over and spend at least 35 hours a week caring for a person who recieves the Disability Living Allownce at the middle or higher rate for personal care.
You cannot get Carers Allowance if you are in full time education of 21 hours or more or if you earn more than £95 after certain deductions like income tax have been made.
Carers allowance is £50.55 per week
Telephone: 01253 856 123
Click on the Directgov link for more information.
 
Cinema Exhibitors Association Card | Print |

The Cinema Exhibitors' Association Card

The cinema card is a national card that can be used to verify that the holder is entitled to one free ticket for their carer that is accompanying them to the cinema.

You will need to meet one or more of the following criteria:

1. Be in reciept of D.L.A. or attendance allownce.

2. Be a registered blind person.

The card is valid for 3 years from the date of issue and costs £5.50 for processing fee.

Application forms are available from UK cinemas supporting this card or the contact details:

The Card Network
Network House
ST.Ives Way
Sandycroft
CH5 2QS
Telephone: 0845 123 1292

Click on the CEAL logo for more information.

 
Disability Living Allowance | Print |

Disability Living Allownce

D.L.A. is for people who have a disability or an illness and is paid to their parent/guardian until the age of 16, after which is it is paid to the child in their own right. It is not means tested and is also a tax free benefit.

DLA is broken down into two parts.

1. Help with Personal Care

2.Help with Getting around/Mobility

Your child may be entitled to one or both parts dependant on their needs. The child’s needs must be in excess of what a child without disabilities of that age would need.  

1.Help with Personal Care  - The care component of DLA is set at three rates. 

Lower rate - To qualify for the lower rate component your child must require extra care for a significant portion of the day. (£17.75 per week) 

Middle rate - To qualify for middle rate component your child must need continual supervision or frequent care during the day prolonged or repeated care or supervision during the night. (£44.85 per week) < />Higher Rate - To qualify for the higher rate component your child must need the care and supervision requirement across the day AND night. (£67.00 per week)

 2.Help with Getting Around/Mobility

The mobility component of DLA is for children who have difficulties getting around and walking and is set at two rates. 

Lower rate - This is only available to children over 5 years of age who need significantly more help, guidance or supervision outdoors than any other children of their age (£17.75 per week)

Higher rate - (available from 3 years of age)

This is for children who have severe difficulties walking or cannot walk, severe mental or behavioural problems(£46.75 per week)

Telephone: 0800 88 22 00 for a DLA claim pack from the Disability Benefits Unit.

 If your claim is successful it will be backdated to the date of your claim even if it takes a while to fill in the form. The application form for Personal Care is extensive. Try to keep a diary of your child's daily care and supervision needs for a period before you fill the form in, and you can ask a professional involved with your child for help to fill  in  the form. Keep a copy of the form for future reference.

Click on the Directgov link for more information.

 
Disabled Facilities Grant | Print |

Disabled Facilities Grant

A Disabled Facilities Grant is a local council grant to help towards the cost of adapting your home.

There is no means testing for families of disabled children under 19. 

Disabled Facilities Grants are available in England, Wales and Northern Ireland only.

Contact your local council for more information.

Scottish residents should contact the social services department of their local council for information on any grants that may be available.

 
Free Nappies | Print |

Free Nappies

Usually allowed from age 3, but for some boroughs it may be older.

They are also other incontinence products available.

Request the information from your GP, Health Visitor or Incontinence service.

 
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