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




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.
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.

Reduction In Council Tax | Print |
Reduction in Council Tax
You may be eligible for a reduction in your council tax if your chilld uses their wheelchair or specialist seating indoors or has had a bathroom/kitchen adapted for their needs.
Contact your Local Council to request a form to fill in.
Click on the Directgov link for more information.

Information contained on this website is not intended to replace information you have received from Doctors or other Health Professionals.
You should always consult with a Medical Professional for medical advice.
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