Parents and carers of disabled children ‘fed up of being afterthought,’ council told

Disabled children and their families are “fed up of being an afterthought” in Town Hall policy, a parents and carers group has told the council.

Healthwatch Hackney boss Jon Williams presented the views of Ann-Marie Dawkins, the co-chair and co-founder of Hackney Independent Forum for Parents/Carers of Children with Disabilities (HiP), to leading councillors last week as part of a ‘Community Voice’ item.

Dawkins’ comments focused in on council plans currently under consultation which seek to embed a number of child-friendly principles into the borough’s future development, as well as challenges experienced by families in transport, education, and access to services.

Dawkins said: “It is excellent that you, the [health & wellbeing] board, are planning a child-centred borough. However, I want to put the case for doing so with special educational needs and disabilities (SEND) and disabled children front and centre of the planning.

“One size does not fit all. What works for all children in the borough may not work and often works against some disabled children. It is about equity, not equality. This means if you make any significant changes in policy – budgets, road layouts, schools, housing policy, you need to consult the families of disabled children from the outset, not just as an afterthought.

“Our children and our families are fed up with being an afterthought or a bolt-on. Disabled children experience deep inequalities as children and adults. Covid has amplified and widened the yawning inequality chasm. Because of this, families need specialist support with specialist consideration, not special treatment.

“The need is to speak to them and take their disabled needs into account. This is enshrined in law. Too often councils plan and implement policies that make big change with barely any thought for the needs of disabled children and their families.”

Pointed to the rapid introduction of LTNs, Dawkins said that she was a “fan,” but pointed to a small group of families whose children have blue badges “hugely impacted” by the change, mainly Black, Asian and minority ethnic (BAME) single parents according to HiP, some with autistic children who unable to public transport or walk safely for long because of their severe sensory issues.

HiP added that the changes also impacted on bus travel for the children’s playgrounds and the school garden, and complained that families and other blue badge holders “should have been contacted long beforehand” about the changes, adding: “Instead they were told to suck it up by a largely able-bodied white men who did not have a disabled or autistic child, and who had a bigger voice.”

Dawkins went on to call for more accessible and suitable housing for families with disabled children, adding that HiP knew of “too many families who are languishing in hostels or totaly unsuitable temporary housing for years,” before outlining the bad behaviour seen by some schools towards families in excluding or forcing disabled children into home schooling.

She added: “Raising a disabled, autistic or learning disabled children can be tough. Decent housing is a must to enable families to support their children. Families spend too much time fighting for support to access services and their children’s rights.

“Schools also play a huge part in our children’s lives. Many fail disabled children because they fail to make meaningful reasonable adjustments to accommodate children. They treat them like they don’t count because they bring down school attainment.”

Through Williams, Dawkins’ statement called on listeners Hackney Mayor Philip Glanville and Deputy Mayor Anntoinette Bramble to put in place mechanisms to prevent the “under the radar” discrimination against disabled children, with the importance further stressed of swift access to disability-specific and informed mental health support for families.

Williams added: “We need to see this in the context of Covid and its impact on disabled people. We know that disabled people have had a brutal experience in Covid and inequalities have significantly worsened.

“Speaking to Ann-Marie, we see that in this child-friendly approach, it is very important to make sure that disabled people are involved, really, properly, fully and genuinely in this borough.

“If you are going to be doing this work and developing these strategies, disabled children and their families need to be involved right from the beginning, and they should always be the first there.

“It’s making sure the entire borough builds around them, because they are the most vulnerable in our community. If you can build a child-friendly borough with them in mind first, then all children will benefit.”

The Town Hall is consulting until 12 February on Hackney-specific principles which would seek to give children and young people a greater voice in how their neighbourhood changes, while designing out social exclusivity and focusing on health and wellbeing through greater contact with nature and a deprioritisation of space for the private car.

SEND chief Cllr Caroline Woodley said when the plans were announced that the new guidance would also have independent mobility for children at its heart, with the plans also mentioning the inclusion and provision of play equipment for “a wide range of ages, physical and sensory abilities.”

Glanville in responding to Dawkins’ statement said that he “really wanted to help,” characterising what was said as “really powerful” and “a really important critique…the voice of somebody very experienced in the system with a lot of challenges that we would all recognise across those policy areas.”

Pointing to the absence of specific cabinet members and officers at the meeting who could respond to each point in turn, Glanville went on to stress his keenness to use the ‘Community Voice’ time at the health meeting to “channel it into change and action,” adding: “I don’t feel it is possible to do justice to everything that was said in that powerful testimony, beyond that we need to redouble our efforts to embed equity, equalities and co-production in everything that we do.”

Glanville also pointed to equalities policy development on transport being undertaken at the Town Hall between himself and Cllr Carole Williams, work that has been hinted at previously since the recent High Court judgment finding that City Hall’s Streetspace programme had potential adverse impacts on the elderly and disabled people.

Deputy Mayor Bramble, who leads on education for the council, added: “I know that we have spoken to SEND parents virtually and trying to gauge the challenges that they have across the system. We do liaise and go to lots of meetings with parents, and Cllr Woodley is always open and advocating for families.

“As Mayor Glanville said, happy to take away the points that were raised, and would like to know a way to follow it through, so that people know that once what they have said is raised, there is a pragmatic and a clear way back so that people know that they are heard. How do we then ratify that the voices [Healthwatch] have come to us with that it has made a difference through the system.”

The Mayor went on to suggest a meeting with the council’s engagement and consultation team.

Williams added: “It is a struggle to get community voice getting going properly. It takes a huge amount of work for people to come along to this board.

“They find you all quite intimidating – it’s not an easy thing to do, and is even more challenging doing it like this.

“[Ann-Marie] was wanting to give you examples. She was not expecting replies right here and now. She wants to have a strong dialogue between disabled people, the council and health institutions.”

You can have your say on plans to make Hackney a child-friendly borough here.