Barnet family urge those raising young Disabled adults to apply for life changing funds

Charity fund seeks to counter cost of living crunch for young Disabled adults and their families

A young person using a motorised wheelchair
Photo by Jon Tyson on Unsplash

A Barnet family who were granted a life-changing wheelchair are urging families on lower incomes raising young disabled adults to come forward.

The Ikhlef family care for daughter Nur, 21. Nur has a rare life limiting illness called fucosidosis which affects how her body breaks down sugar. Mum Furishia explains, “Nur also has juvenile idiopathic arthritis, which means her joints are often swollen and painful. She’s already had a double hip replacement at 15 years old and is currently waiting for her knees to be replaced.

“Nur’s condition affects her body and brain causing some learning delays. She enjoys communicating and can express herself pretty well. If you speak to her, it’s important to be direct and give her two options to not overwhelm her. Mentally she’s about six years old. Despite the pain that she’s often in, Nur never complains. She gets on with her day, which is admirable.”

Nur was granted a life changing wheelchair through Family Fund’s Your Opportunity programme which offers grants to disabled adults aged 18-24 years old, living at home, whose families are struggling financially. In the last 12 months, it supported over 2,269 disabled young people and their families.  

Furishia says, “I have to take Nur to appointments and fold the wheelchair in and out of the car. It’s much easier for me to do now as the new wheelchair is lighter. Her previous wheelchair was a lot heavier, and it hurt my back having to move it around. The grant has allowed us to go out more frequently and easily. It’s also easier for Nur to wheel herself because the wheelchair is lighter. Her wrists don’t hurt as much as they’re quite fragile. The wheelchair has given Nur a lot of independence.”

In recent research by the charity, over half of parents and carers (57%) experience a sharp drop in available support for their child as they get older, with only one quarter (28%) receiving adult disability benefits compared with three quarters (78%) receiving child disability benefits. 

Almost three quarters (72%) of parent carers said everyday costs resulting from their child’s disability are higher than when their child was younger, with 92% saying this was because everything has got more expensive in general.   83% said they pay more for food groceries for their child, due to their disability or illness. 59% said they had to buy specialist toys and play equipment for their child and 20% had to pay for home adaptations like stair lifts or heating systems. 17% have needed to buy special equipment like wheelchairs or specialist car seats. 78% said they have to spend more on clothing, due to how they child with additional needs uses it 

Cheryl Ward, Family Fund’s Chief Executive Officer, said:   “Half of families report a fall in disability support benefits from child to adulthood, leaving them on a financial cliff-edge as young people reach eighteen. 

“Our Your Opportunity grants are here to help support young disabled people across the UK to lead fulfilling lives. We strongly urge families that are struggling with costs to apply to us for a grant as soon as possible, which could help to improve their quality of life.”

Your Opportunity grants include: 

  • computers or tablets to support young people with further education, online hobbies and the overall building of independence;
  • transport costs for bus fares for appointments, or to support independent travel to clubs or hobbies;
  • white goods to help with independence, or help make mealtimes easier for carers
  • help with the cost of buying a provisional driving licence, and other learning materials, to support driving ambitions;
  • sports, or lightweight, wheelchairs to enable participation in sport activities, or access to activities that would not be possible with a day-to-day wheelchair. 

 Families are eligible to apply if the young person lives at home with their parent or main carer. Families interested in making an application for a young person should go to:

The Your Opportunity scheme was initially set up in 2019 by Family Fund, and is provided through funding from The Edward Gostling Foundation, Pears Foundation and NPC Open Philanthropy.

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