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Families who have children with special needs and disabilities often feel overlooked. We spoke to the mums who are reaching out to them, as part of the national Parent Champions volunteer scheme.
Antoinette Johnson knows all too well that many SEND parents – those who have children with special educational needs and disabilities – feel like they have to fight for everything. It’s extremely hard to find the right childcare. And it’s common to get into disputes with local councils, nurseries, schools, and holiday clubs while advocating for your child.
“It’s a constant fight, which takes a toll, not only on the child but on you as the parent as well,” says Johnson (pictured above), a family support worker, who has a 16-year-old son with autism and learning difficulties.
“Because you’re always in this ‘battle mode’, even [when] you talk to people who are your friends, you sometimes find that you’re always snapping.”
Johnson now tries to use her own experiences to support other SEND parents, by volunteering as a Parent Champion. She works with roughly five families a month in Brent in north-west London, sharing advice on everything from local school-holiday clubs to fiddly funding applications. As the cost-of-living crisis has escalated, she has also had a rising number of queries about where to find food banks.
Johnson is one of roughly 320 Parent Champions across the UK, who are grouped in 43 local schemes. Coram Family and Childcare, a charity, set up the volunteer network in 2007, as a way for local parents to reach out to families who might otherwise become isolated.
SEND families have had a particularly tough time in recent years. During Covid lockdowns, they had to manage their children’s needs alone and many services that closed during that time have not re-opened. Over 70% of SEND parents say their childcare has not returned to normal since the pandemic, according to Workingmums.co.uk’s annual survey, which polled over 2,200 parents this summer.
Coram has five Parent Champion schemes focused on SEND, where all the volunteers are SEND parents. Almost every scheme has some SEND parents amongst its volunteers. Each scheme also tries to recruit volunteers with personal experience of issues such as post-natal depression, being a single parent, or being from an ethnic minority or refugee background, depending on the types of local families that need support.
SEND parents are able to offer each other a unique type of peer-support, because of their shared experiences.
For example, finding SEND childcare often involves a maze of paperwork and processes, and it can be hugely helpful to have another parent as a guide. Many families don’t know their rights and many childcare providers don’t know what funding they can apply for, says Rosie Fletcher-Brown, a Parent Champion in Kingston in south-west London.
“There are so many mixed messages…[when there should be] a clear message just from one place,” says Fletcher-Brown (pictured above), whose five-year-old son has autism.
Fletcher-Brown, a teacher who is taking a career break to look after her son and manage some of her own health issues, has experienced this confusion herself. She had to tell a school-holiday club that they could apply for council funding to provide support for her son, after they incorrectly asked her to pay much higher fees to cover this cost.
Johnson, who is from an Afro-Caribbean background, is also well-placed to empathise with SEND parents from ethnic minorities. She explains that in some communities it can be harder to explain SEND issues to friends and family, as she herself experienced.
“If it’s a cultural thing where they don’t believe in disabilities, [where they believe that] every child should be able to learn, then it’s really difficult explaining to your family that that’s not the case. I struggled a lot when my son was first diagnosed,” says Johnson, whose son is now incredibly close with his grandmother.
Coram trains Parent Champions before they start volunteering and oversees the national network. Day to day, most local schemes are run by the council, which appoints a staff member to act as a volunteer manager. Some schemes are run by a local school or charity.
Within this structure, each Parent Champion can be quite proactive in how they support families. Johnson sometimes takes parents to children’s centres or clubs and introduces them to the staff, if they feel nervous about trying a new service. Fletcher-Brown has advised a local soft-play centre on setting up play sessions for SEND children.
Many SEND families feel overlooked and gradually lose faith in any authorities, which can lead them to become isolated and unaware of new services. This makes the Parent Champion role particularly vital. “We’re trying to reach parents wherever they gather…and wherever we are with our own children,” says Fletcher-Brown.
“As a parent of a child with additional needs, you kind of listen most to other parents,” she says.