50 years on from thalidomide – Family Fund marks five decades supporting disabled children

Family Fund 50th anniversary media pack

Contents:  

Introduction – Timeline –  Get involved – Snapshot Of Family Life Today – Parenting in the current climate –  Family Stories  

Introduction   

50 years on from thalidomide: Family Fund marks five decades supporting disabled or seriously ill children   

Family Fund, the UK’s largest grant-making charity for families raising disabled or seriously ill children, on the lowest incomes, turns 50 years old on Sunday (April 2nd).    

In its 50th anniversary year and in the current climate, the charity finds itself in greater demand than ever before.    

As costs of living remain sky-high, its grants for essential items such as beds, bedding, clothing, washing machines, cookers and play and sensory equipment or for much-needed family breaks, are a lifeline to families – many are struggling to cover the essentials for their children and have had to cut down on activities and equipment to support their children’s development and wellbeing.     

Last year alone, Family Fund delivered 170,919 grants and services, worth over £37 million, and received a 135% increase in grant applications since before the pandemic.    

The charity began life in 1973 after a public campaign on behalf of children affected by thalidomide. 

Formed as part of a £3 million fund provided by government to support families affected by this drug, it awarded its first grant of £26 for a father to travel from Wales to visit his sick daughter in hospital, on 2 April 1973.   

Public understanding of life for families raising disabled or seriously ill children has grown over the decades and the role of Family Fund has developed to include wider support beyond grant making services.   

During the last 50 years the charity has provided 1.5 million grants and services for essential items to benefit disabled children.  Behind each grant is a unique family story.    

Following the dramatic impact of the pandemic on the financial, physical and emotional health of families, recent research by the charity reveals that families continue to face a triple whammy of sky-high costs on top of severely reduced incomes.  This is due to intense caring responsibilities and three-times-higher costs to look after a disabled child.     

 Cheryl Ward, Family Fund’s Chief Executive, said:  

 “For 50 years we’ve played a vital role in supporting families with disabled or seriously ill children, helping to make life easier with grants and services, whilst making their voices heard and  sharing their experiences to influence lasting change on issues that matter to them. 

“We are proud of the way we have supported families over this time, and continue, as we have for 50 years, to be led by what parents and carers themselves tell us what they need to make a difference to family life. Families continue to tell us our grants make a huge and practical difference to their everyday lives and for many they remain a lifeline.   

 “However, we are needed now more than ever, and continue to see the highest numbers of families coming to us for help in our history, with a 135% increase in grant applications since before the pandemic. Families are overwhelmed by living costs and facing staggering financial pressures which are now affecting their children’s quality of life.     

“We are pleased the Government is supporting households by limiting the average energy bill at £2,500 a year as well as supporting those on Universal Credit by paying for childcare upfront.  

“We are committed to continue to work with all of our funders across the UK Government, Charitable Trusts and our donors, to continue to grow our support for families raising disabled or seriously ill children and we remain to all who aid us to help as many families as possible.”  

Alongside giving grants, Family Fund also offers families raising disabled or seriously ill children, on a low income, wider support, including information and resources on where to go for help with money and benefits; budget planning; their children’s education; mental health and wellbeing; digital training and creative workshops.   

Get involved to make a difference to vulnerable children’s lives  

Family Fund is encouraging members of the public during its birthday month to hold a Big Birthday Brunch this April, coming together with friends and family in support of the work of Family Fund in its 50th year.   

It is also appealing for people to join it’s Big 50 Challenge – from walking or cycling 50 miles, swimming 50 lengths, holding a 50-question quiz night or creating a Big 50 Challenge of their own.   

Timeline 

Snapshot of family life today  

In the UK, 9% of children have a disability and almost one third of these children (32%) live in poverty (Joseph Rowntree UK poverty 2023). This month we asked families* what the single biggest challenge they face is:

Over a third of parents (36%) cited having reduced income, due to caring responsibilities, as their single biggest challenge:  

“It’s not the easy option to stay home to care for your child – I work harder than any full time employee as my shifts are 24/7.” 

“Raising a child with disabilities is tough, life is not what you expect or anticipate it to be. It can be lonely and isolating, and there can be lots of judgement which adds to our overall challenging experience. It is grief, shock, worry and the realisation your child has a disability that you cannot prevent or take away for them, at times you feel helpless and all you really want to do is protect them. We don’t have the right to strike, or the right to a pay rise, like everybody else does. So we’re basically irreplaceable.”  

“We get Universal Credit and people think I don’t want to work, if I could work I would.”  

24% said their biggest challenge was poor access to essential services:  

“The lengths we go to as parents, to advocate for our children’s needs, and the impact this has. How difficult it is to access support in a timely way that benefits children and reduces their struggles.” 

“It’s truly exhausting and you need loads of energy to ensure your child or young person receives what they are actually entitled to.”   

“It’s a struggle even getting through the day sometimes.  The extra battle of services passing you about, everyone wanting you to be someone else’s problem.”  

1 in 5 said the lack of understanding about their child’s behaviour and needs was their biggest challenge: 

“They are not naughty children that can or need to be fixed with discipline, they are unique and just need a little more attention and understanding.”  

“We need to recognise disabled children for their strengths and unique skills and celebrate these and ensure society is inclusive and provides an array of opportunities.”  

“Non-verbal children are not being rude.”  

“My child has ADHD and her condition makes her act impulsive or renders her easy confused. The way people treat her when she becomes confused or unsure makes her more confused and scared. If people could recognise people don’t just act strange for no reason, that there is a reason and to be kind it would make the world a better place for all these kids.” 

“It’s better to come from a place of understanding and support, than one of judgement.”   

20% also reported the struggle with extra costs due to their child’s condition:  

“Things are not cheap anymore. Just taking my little one to a sensory play cost £8.”  

“The costs, and not being able to work or get childcare. It not working for children who can’t manage mainstream and have to stay home. Which means more money for food, heating etc.”  

Parenting in the current climate: 

 Our latest research findings show:  

• Nine out of ten families are struggling or falling behind with bills, particularly energy bills, and over half say their debts have increased in the last year, with one third using credit to pay essential household bills; 
• Eight out of ten families have no savings, and seven out of ten families report not being able to save even £10 a month. This leaves families in a precarious financial position, with four out of five saying they would be unable to pay an unexpected expense of £200; 
• Over four out of five families (82%) say they can’t replace worn out furniture; nearly four out of five (78%) say they cannot afford to repair, or replace, major electrical goods such as cookers, fridges or washing machines; 
• One third of families have visited foodbanks in the last 12 months and four out of ten experience low food security (limited access to adequate, safe and nutritious food); 
• Up to 74 per cent of families caring for a disabled or seriously ill child are struggling to pay energy bills and 23% of families are unable to pay at least some of their essential household bills. 

Family stories and photography