Families in Scotland share views with Minister for Children, Young People and The Promise

At Family Fund we put families in direct contact with parliamentarians and policy makers- so their personal views and experiences of raising disabled, and seriously ill, children and young people can shape the future.

Last month, we set up a meeting between families supported through Family Fund’s Scotland grant programme and the Minister for Children, Young People and The Promise, Natalie Don -Inness MSP.

Parent carers, including Siobhan, Elisha, Sheryl and Siobhan, and young carer Lillith, travelled from five different local authority areas to share personal perspectives of caring and accessing support. They powerfully conveyed challenges faced, when accessing services and entitlements, and raised stigmatising practices and a lack of information. They also spoke positively of the difference it makes when a service is delivered in a responsive, respectful and supportive way.

Families play a crucial role in supporting children’s development and wellbeing, and enabling them to realise their rights, as set out in the United Nations Convention on the Rights of the Child (UNCRC).

Families at the meeting described how being given a grant item from Family Fund means parent carers are better placed to support their children and young people’s development and wellbeing, as well as their own health and wellbeing.

“It is very challenging for parents and carers to speak out when needed and anywhere I can help my son’s voice be heard or any services we have accessed, I am totally grateful for the opportunity.”

The difference we make

Eligible families raising a disabled or seriously ill child aged 0-17 years, on a low income, can apply for a grant from our Family Fund Scotland programme.

We consider a range of requests, and families attending the meeting had been supported with wide-ranging items, including family breaks, digital devices, sensory equipment, bedding and trampolines.  

Families told us why they applied for certain grants, and how the benefits to their child, or young person, are unique and personal. Each family, child or young person, their circumstances, strengths, needs and preferences are different.

Sheryl shared that the iPad she received has been an excellent learning tool for her son, Mason, describing it as “the best thing he’s ever had.” Mason, who was recently diagnosed with ADHD and autism, has faced disruptions in his education in the past. Now, with an individual learning program in place, he uses his own iPad to engage in learning activities. He also uses an Apple pen with the iPad, which helps develop his fine motor skills.

Lilith, aged 12, is a young carer for her sister Ophelia, 14. She came along with her mum Siobhan, who we have supported with trampoline, and bedding:

“Ophelia, due to her poorly brain, has to be looked after 24/7. Having a safe and enclosed garden is very important and unfortunately our previous trampoline had been damaged due to a storm. The application was a lot easier than expected.  We received the trampoline within a few months and both Ophelia and Lillith have spent hours playing on it. 

“Ophelia has incontinence and urgency, therefore we go through a lot of bedding. Unfortunately, Ophelia cannot manage her bladder and during the day she wears special underwear and, at night, wears nappies. Unfortunately, this will always be the case as there is no cure for this and having clean bedding is very important. We received a gift card for Argos and bought several sets of bedding.

“These grants have really helped as I am unable to work due to Ophelia’s care needs.” 

Siobhan and Patrick have two children, Adam, 13, and James, 11. Adam has autism and a learning disability, and experiences sleep issues. James is neurodiverse. Siobhan applied for sensory equipment to support Adam to transition to sleeping independently. Unfortunately, whilst the sensory equipment has supported Adam’s wellbeing, the family have had to move to two-bedroom accommodation, as their previous landlord decided to sell.

Elisha spoke at the meeting about her families’ experience of accessing a family break grant which they used at Christmas to see family in England. Her and her partner Andrew have two children – Blake, 9 and Amayah, 3. Blake has ADHD, Pathological Demand Avoidance, Oppositional Defiance Disorder and is awaiting an autism assessment.

“I worry about affording Christmas and it can be a struggle to afford to travel to see family. It can also feel even more lonely and isolating than the rest of the year. The Family Fund grant allowed us to book a break that would suit all of us. We wouldn’t have afforded this.

“It’s actually the first Christmas we have pictures of Blake and Amayah enjoying themselves, as usually Christmas is so overwhelming that we forget, and can’t do activities that other families can do. It’s the first Christmas that Andrew and I can look back on and say, ‘that was nice.’  Andrew and I live every single day in fight of flight. We feel like we’re constantly on 100%, watching and panicking.

“This break gave us the rest we needed, to be able to watch the kids being free, safe and happy.”

Values in action

Families described Family Fund staff as ‘understanding,’ ‘friendly,’ ‘non-judgemental’ and ‘respectful.’ They felt that they had ‘been heard’ after finding it, initially, hard to ask for support.  They wished that all staff working in services that support families of disabled children and young people received training to ensure they adopt a similar approach.

Change for the future

Carers said how much they value partnering with organisations and other carers to influence positive change – sharing experiences and the love they have for their children and the joy they bring.

Sheryl, from Glasgow, said: “I would just like to say a massive thank you to yourselves, and the Minister, for letting our voices be heard. It is very challenging for parents and carers to speak out when needed and anywhere I can help my son’s voice be heard or any services we have accessed, I am totally grateful for the opportunity.”

Siobhan, from Ayrshire, said: “Family Fund has given me some opportunities to be able to get our story out and to meet people who have some understanding to being a carer 24/7. It affects every part of our lives, but I wouldn’t change any part of it for the world. I am so proud of both Ophelia and Lillith and the relationship they both have.”

Thank you to all the families who share their voice with us – to raise better awareness of the realities of life, every day.