Mandy tells us about her experience of raising a disabled child, in the late 90’s, and early 2000’s. Little did she know that Family Fund would play a huge part in her life, both with supporting her family and in her career. Mandy has now worked for Family Fund for 21 years.
Family Fund support
“I first applied to Family Fund when Liam was five. It was very much on the recommendation of other families. To be honest, I didn’t know anything about Family Fund. I had a lovely assessment from a visitor who still works for the charity. They told me what might be available for Liam and since then we’ve had holidays, a new tumble dryer, clothing and other things. Frankly, it was a godsend. Liam has a younger sister Megan. He has multi-disabilities – amongst other things, mild cerebral palsy, epilepsy, ADHD, autism, moderate learning difficulties and he suffers from severe anxiety.
“It’s been an evolving journey. Liam was a premature baby – 3lbs from the off. He’s now 31 and back living with us. He was in assisted accommodation but was too anxious (not helped by the restrictions around the pandemic) and he has now moved back home. We’re a resilient family and after the first grant we re-applied in subsequent years. Normally, it was a holiday grant, because when you’re on holiday you’re just a family and you’re away from intrusive professionals. Your life is not your own if you have a disabled child. You’re always having to respond to multi-disciplinary teams. On holiday you can get away from all of this. With a disabled child you lose your identity. I become ‘Liam’s mum’.
“Liam developed a love of music. He applied to Family Fund for an acoustic and electric guitars which were gifted to him. It felt like guilt free shopping.”
“At one stage we had some adaptations to the house, through a Disabled Facilities grant and, again, Family Fund were helpful. They helped with furniture and carpets. They’ve just been there at the right time.”
“Liam’s sister Megan has always been very resilient, supportive and has never shown any resentment. Now she has two children of her own.
The evolving world of disability
“As far as other services are concerned, I’ve always been self-sufficient and have known what else was available. Today we live in a very different world from when Liam was small and signposting is very important. Sometimes families find it very difficult, and rather than money they need someone to talk to, for advice. Disability is an evolving thing. Liam’s needs today are very different from when he was a twelve year old. The transition to adult services is also very difficult and many families miss out on available services but, as young adults, they are entitled to a life of their own and the required support should always be available.”
“As a carer it’s easy to become exhausted. Disability changes you. I refuse to let it define me but the impact is huge, not just for me, as a parent, but for the family as a whole. I now work for Family Fund, as does my daughter and sister. It feels right to be able to give something back. The charity has become a huge support system which is no longer just about grants. It is the ‘go to’ place for disability, a large organisation that is more than a grant provider, also a service provider. And it’s not just about ticking boxes. This is people’s lives; every story is different and we respect that. I’m proud to tell people what I do. We’re the best kept secret and should be part of the induction of every social worker.”
Family Fund’s Eligibility and Quality Assurance Supervisor
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