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Carlie in front of an Autism Hope display stand

Carlie tells of her experience of poverty, and the systems that do (or don't) support families with additional needs

Carlie in front of an Autism Hope display stand

What does poverty look like today? What is at stake when the Government talks of cutting benefits? What needs to change in society?

Those were some of the issues raised at the Archbishop of York’s recent roundtable discussion on tackling poverty in Yorkshire, at which I shared my experiences of life in a family with additional needs.

I have come to understand poverty personally, as my son was diagnosed with severe autism at two and couldn’t access day care, so I had to stop working and was living in rented accommodation with two children, on benefits.

Carlie, far left, took part in the recent roundtable discussion on tackling poverty in Yorkshire

Inspired by my experience

What this experience did was inspire me to do set up Autism Hope Sheffield six years ago, through the Parson’s Cross Initiative in the north of the city. Autism Hope is a parent-led support group, with one main goal: to connect other parents who have children with autism spectrum disorder.

The group was born out of a desperate need for connection and understanding, both of me as a parent and of my beautiful son. Isaac was two when he was diagnosed, after showing profound regression at eighteen months.

This began our journey in the world of autism. Seeing your child regress and lose skills they have previously held is incredibly frightening for a parent. My once sociable and happy infant became extremely anxious and lost in his own world, with me unable to reach him.

Group members support each other, but there’s still an isolation and a stigma you can feel. There are parents who can’t work, because they’ve got a child with severe anxiety. They’ve given up their jobs, and they’re living in poverty and with the judgment that goes with that.

This week is Challenge Poverty Week, a chance to speak up about the systems and structures that hold many people back. When we talk about poverty, families with additional needs are often an overlooked group.

I consider myself one of the lucky ones in that the severity of Isaac’s autism meant the diagnosis took less than twelve months. However, those twelve months were incredibly difficult and frightening.

Parents are facing this every day and unfortunately the wait for diagnosis is now years rather than months. These are children who may have regressed like Isaac did or who may have hit milestones in their development such as walking and talking yet struggle dramatically with social skills or have sensory irregularities.

A common factor for some children is their ability to mask in school, yet on arrival home they relax and all their held-in emotions erupt, and their parents are at a loss how to help. This can be a major battle for parents as school may not see any problem, and cannot understand why the parents request help.

So, what needs to change in society, to support children like Isaac and families like mine?

Firstly, many schools could do more to accommodate the adjustments that would help a child’s ability to have a successful mainstream education – such as allowing a child a start time five minutes before or after their classmates, or allowing them to eat in a separate place.

Secondly, more should also be done to support parents to access specialist provision where appropriate, and more investment is needed.

Many parents’ applications are turned down because of the shocking lack of places in schools, or on the basis that the needs of the child cannot be met. If a specialist provision cannot meet the needs of the child, then where will they access the education every child is entitled to?

Thirdly, more support for mental health for children and parents should be a priority. A child shouldn’t have to wait months – sometimes even years – to receive much-needed counselling and therapy. 

Anxiety, depression, and self-harm are common with children with autism and the waiting time is devastating to a parent at their wits’ end, trying to keep their child safe. Parents may have to give up work as they need to be full time carers, and this affects the family’s finances dramatically.

A posed group shot on the steps of Bishopthorpe Palace, of event attendees

More understanding is essential

More understanding is essential – of children who are non-verbal yet who fight magnificently to get their needs met in whichever way they may communicate, of children whose anxiety means they cannot leave their bedroom and self-harm, and of parents trying to function and hold it all together whilst neglecting their own care needs. These are the realities of family lives and without more support and funding, this situation is only going to get worse.

NHS waiting times for assessments also need to be improved dramatically but, in the meantime, there are things that can be done – such as clear signposting to parents what the process for assessment will be, and how to apply for an EHCP (education, health and care plan) if needed.

Financially, more should also be done to support parents to claim carers’ allowance, disability living allowance and other state benefits, and these benefits must be increased, to reflect the financial insecurity and extreme difficulties families face.

That is what is at stake when we talk about poverty and benefits.

Carlie Brough is co-founder of Autism Hope Sheffield, and took part in the Archbishop of York’s recent roundtable discussion on tackling poverty in Yorkshire. A version of this article was also published in The Yorkshire Post on 19th October 2022.

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Tracey Herrington speaks and others listen, at the Archbishop of York's recent event

What happens when we truly listen to voices that have been ignored? What ideas emerge, what issues are raised, and what do we learn?

This week, we are encouraging faith leaders and MPs to widen their conversations about poverty, and to do three things:

  1. Commit to participate only in poverty discussions that are truly inclusive, and to challenge and question the organisation of ones that are not
  2. Commit to organising a roundtable event on tackling poverty in their own region
  3. Engage with local groups with experience of poverty, and with national organisations with expertise, to help to make this successful.
A shot of people around a large table, including the Archbishop of York

Around the table in York

In September, as a prelude to Challenge Poverty Week, the Archbishop of York Stephen Cottrell hosted a roundtable discussion on tackling poverty in Yorkshire, in collaboration with Church Action on Poverty.

Attendees included:

  • People with experience of poverty and marginalisation in York, Sheffield, Halifax, the East Yorkshire coast, Teesside and Bradford.
  • The Archbishop of York, Stephen Cottrell, and several members of Church of England staff and clergy.
  • People working in professional roles focused on tackling poverty, including from Joseph Rowntree Foundation and Church Action on Poverty
People sitting at a table at the Archbishop of York's roundtable event

What we heard

Attendees raised and discussed a range of issues, bringing first-hand insight and ideas. Topics discussed included:

  • What support would make a particular difference for families with additional needs?
  • How to improve support for people who have been relocated by local authorities
  • Types of positive media coverage that can help tackle poverty
  • Feelings of stigma
  • The lasting impact of adverse childhood experiences and/or addictions
  • Above all, the need for truly inclusive approaches that ensure voices of experience are heard and heeded.
The logos of Church Action on Poverty, the office of the Archbishop of York, and Challenge Poverty Week England and Wales

Challenge Poverty Week: a call to act

This week, as part of Challenge Poverty Week, we have sent a briefing to all MPs in the Diocese of York, and to all northern Bishops. It reports on the Yorkshire event, and encourages people to do three things listed earlier:

  1. Commit to participate only in poverty discussions that are truly inclusive, and to challenge and question the organisation of ones that are not
  2. Commit to organising a roundtable event on tackling poverty in their own region
  3. Engage with local groups with experience of poverty, and with national organisations with expertise, to help to make this successful.
Bringing people with lived experience around the table… Let’s create our own table, and we’re all part and equal around that table and issues are discussed. Reality is put to the statistics and together we collaborate and work out a way forward. So the approach is very participatory, very collaborative.
Tracey Herrington
Thrive Teesside

Listen up! - A call to action

It’s easy for society to turn to the same voices again and again, but only by proactively seeking out and listening to voices of direct experience, can we gain a full understanding of any issue.

And remember, we should beware of the trap of thinking we’re “giving a voice”. People in poverty already have very effective, powerful voices – but they have often been ignored or drowned out. We don’t have a shortage of voices – we have a shortage of listeners and of people in positions of power willing to engage meaningfully.

Tracey Herrington speaks and others listen, at the Archbishop of York's recent event

We all have a role to play in developing more participatory approaches on poverty. Crucially, we can all commit to participate only in conversations about poverty that are inclusive and which meaningfully involve people with expertise based on experience. We should all open up conversations that we organise, and challenge others to do likewise.

We encourage Bishops, faith leaders, community leaders and politicians to do this in full partnership with organisations and people with lived experience, and to learn from good practice.

Broad and truly inclusive conversations can be transformative and can unlock impasses that often hold communities back. They can bring new issues and perspectives to the table, greatly accelerating everyone’s learning and bringing solutions closer to fruition, and enable productive processes. They can also help shift public attitudes to poverty, and build recognition of the scale of the change required.

A posed group shot on the steps of Bishopthorpe Palace, of event attendees

The Yorkshire event enabled the forging of new relationships, which will foster further joint work. It also demonstrated the wealth and breadth of untapped expertise held by people with first-hand experience of poverty, including on issues that have not yet had sufficient attention. 

For instance, two people spoke about having been relocated by a London local authority to West Yorkshire, and the lack of support there was around that move, and others spoke about the need of better support for families with additional needs, whether for children or adults.

We hope the Yorkshire event will inspire similar ones in other regions, and the organisations below are all on hand to help interested organisations.

6 organisations with participation expertise

  1. APLE Collective, which supports groups across the country led by people with experiences of poverty.
  2. Poverty Truth Network, a network of people involved in and interested in setting up Poverty Truth Commissions.
  3. Poverty2Solutions, an alliance of organisations with a focus on delivering change on poverty, and demonstrating the value of including the expertise of experience in policy-making discussions.
  4. Joseph Rowntree Foundation, which has a focus on increasing and supporting participatory projects.
  5. Church Action on Poverty, which has long focused on supporting people with experiences of poverty to be at the forefront of change-making processes.
  6. ATD Fourth World UK, which pioneers the involvement of people in poverty in policy debates and in research.

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