From founding PTAs to launching CICs, here’s how parent carers are advocating for their kids to create real change
For many parent carers of children with additional support needs, life can feel like a constant battle. From pushing for your child to receive the most basic care to taking your local authority to court over education issues, we’re used to fighting our corner to get what our children need. But it can be a hard, thankless, and lonely journey. Sometimes, the support – whether it’s an understanding shoulder to cry on, or an expert who’s on your side – just isn’t there. That’s why some parent carers are choosing to take the initiative and create the support networks they and their children need.
Rachael Penn co-founded a PTA (Parent-Teacher Association) at her son’s specialist school, Fox Wood in Warrington, because she wanted her child, his school friends, and the wider community to enjoy access to play. “The main site had been there for 10 years and, although they’ve got amazing facilities in the playground, they didn’t have anything specifically for the wheelchair users,” explains Rachael. 40% of the school’s pupils use wheelchairs – with the nearest accessible playground 40 minutes’ drive away, it was obvious something needed to change.
With the school’s support, she set up the PTA in May 2024. She admits she “didn’t really know” her fellow parents before – with many of their children using school transport, there wasn’t the usual opportunity for playground chats at pick-up and drop-off. But she quickly made friends, and says: “As a special needs parent, nobody else gets you unless the parent is living that same life. We really bonded and made some amazing friendships.”
BROKEN PILLARS
One of the reasons Bromley-based Helen Ewumi set up Obimi was to make friends. Like Rachael, Helen – a social worker and mum of four – says: “It’s difficult speaking to people who are not walking in your shoes – they don’t understand what you’re going through. That’s why I organise a lot of events. The last brunch we did was amazing. I had over 45 parents, just chatting, having fun, being ourselves, not thinking about our children for a few hours.” By running events like brunches or paint and sip sessions, and offering virtual meet-ups, Helen recognises the importance of self-care for parent carers, saying: “We are the pillars. And if the pillars are broken, everything else is broken.”
Similarly, for the parents of Fantastic Fox Wood PTA, spending time together fundraising by approaching local businesses for sponsorship and organising community events like a laser extravaganza (an alternative to firework displays), the benefits were obvious: “They’d say ‘I’ve been stuck in the house for weeks on end, but I came to a meeting’ and their mental health was improving,” explains Rachael. “I had things in my diary to do; it really boosted me too.”
MAKING MEMORIES
During sleepless nights caring for her son, Rachael stayed awake applying for funding. Her hard work paid off – a £30,000 grant from Certas Energy’s Community Bloom Fund pushed the PTA over their fundraising goal, with the fully wheelchair accessible playground – which will be available to children with special needs across the local area – opening its gates in April this year. “I’m not going to lie and say it wasn’t exhausting and hard work,” she reflects, “but it was worth it. Seeing the smiles on the children’s faces during our grand opening – they’ll be etched in my memory forever.”
As well as providing opportunities to socialise and meet other parent carers, Helen’s role as a social worker means she’s quickly realised the power and potential of knowledge-sharing among families. Through webinars and meetings, she provides accessible information in easy-to-understand terms for parents navigating EHCPs, benefit applications, and education meetings.
“I support parents to understand the lingo,” she says. “There’s a lot of jargon!” She’s also a fount of knowledge, directing people towards resources like bladder services, which provides nappies for children with continence issues. “Knowledge is key,” she notes. “A little information like that can change a family’s world.”
WORLD CHANGING
And what these women have done is world changing, with the impact of their efforts felt widely in the community. Helen uses her own funds to pay for Obimi’s activities but is on the lookout for funding support. She says that her children being proud of her and the thanks she gets from parents she helps are the best reward. “That to me means more than money,” she smiles. “It means more than anything in the world. It’s just one little thing that I’ve done, and I’ve changed the whole family dynamic.” For Rachael, the PTA’s fundraising efforts have been vital: “It gives other children of the community a chance to experience play, and have inclusivity like their friends.”
Both Helen and Rachael set up their support projects to fill a gap where information, funding, equipment, or support was lacking. The grassroots nature of efforts like Fantastic Fox Wood PTA and Obimi CIC means they’re attuned to the very real needs of their communities, providing a lifeline for people who might otherwise be adrift in the system. In the words of Helen: “Empowering parents is very important, so they can say, ‘Actually, I do know my stuff’.” Neither had previous experience in running something like this but, as Rachael puts it: “If you’ve just got an ounce of passion for something that you really want to go for, then you’ll succeed.”