Raising a disabled child in the challenging economic times – ESDEG mothers’ testimony at Westminster

Suchismita Majumdar, Research & Policy Officer, ESDEG

Organised by 4in10 on the 16th of October which was the first day of London Challenge Poverty Week 2023, two of ESDEG’s mothers whose children have special needs went to Westminster to talk to some of the MPs.

In 4in10 words the aim of this visit was “This London Challenge Poverty Week, these (charity) organisations have come together to support some of the parents they work with to bring these concerns to politicians in Westminster who have the power to change things for these families. We hope that by listening first-hand to parent’s experiences they will be motivated to raise these issues in Parliament and push for that change.”

Over the past one-year ESDEG has worked with 4in10 in highlighting the voice of ethnic minority parents from low-income backgrounds who have been struggling to navigate the SEND (Special educational needs and disability) system. With the ongoing cost of living crisis, high rates of inflation, and shrinking services, parents with neurodiverse children have been struggling to survive in London on their low income. To borrow 4in10’s words to explain the situation “the rising cost of living has impacted everyone but if your child has a restricted diet because of their condition, it may not be simple to swap brands to save money or turn down the heating if they have a medical condition that means they struggle to maintain their body temperature. It is well known that NHS waiting lists are very long and while some may have the choice to pay privately for a diagnosis for conditions such as Autism, for those below the poverty line this is simply not an option.”

The organisation who took part in this event were

  • Keen London
  • Mums on a Mission
  • Marjory Kinnon School
  • 4in10 London Child Poverty Network (coordinated the event)

Parliamentarians invited:

Hosting the meeting: Seema Malhotra MP

Constituency MPs of those attending: Diane Abbot MP, Virendra Sharma MP, Mike Freer MP, David Lammy MP, Dame Margaret Hodge MP, Catherine West MP

4in10 also invited the officers of the All Party Parliamentary Group for London and All Party Parliamentary Group on Poverty and a number of members of the House of Lords who take an interest in issues relating to disabled children.

Since time was short, parents were invited to share their experiences on the following issues

  • Getting a diagnosis for your child
  • Accessing Free School Meals
  • Accessing Disability Living Allowance (DLA)
  • Problems with Debt
  • Digital exclusion

From ESDEG the two mothers who attended were Hannah Ahmed and Ruqiya Sabri. They were accompanied by Rahma Elmi, Project Co-ordinator and Suchismita Majumdar Research & Policy Officer. The mothers spoke about the challenges of raising neurodiverse children in this tough climate. Ruqiya spoke about the emotional, physical and financial difficulties she is facing while raising her Autistic child as a single mother, how overwhelmed it feels to provide continuous support and care without any break, how coped up they feel in their home since most of the time they cannot afford to go out.  She talked about the new challenges as her son is growing up and his needs are changing. Hannah talked about the lack of services, how unless it is an emergency or parents are at a breaking point, the support services are no longer available, the overcrowding and unhealthy living conditions in council flats, the long delays in getting appointments at the Carmalita House, the struggles of finding the right school which would support the additional needs of her child.

Virendra Sharma MP who represents Southall where Hannah and Ruqiya live was present during their testimonies and he heard them both. Post the event both the mothers talked about how empowering it felt to talk about the challenges they faced in front of MPs.

MacMillan Room, Portcullis House, Westminster
Virendra Sharma MP with ESDEG mothers Hannah and Ruqiya
Hannah and Ruqiya at Westminster

As Ruqiya put it “You know it (being single mother to an Autistic child) is so isolating and often so difficult it makes me feel very lonely, like there is no one to listen to me. Today it felt so empowering to talk about my struggles. I got so emotional, had tears in my eyes.”

Hannah added “It felt as if there is someone interested to know what our problems are and listen to us. I found the experience very uplifting; I got so emotional; I could not talk properly.”

Special thanks to Katherine Hill, Strategic Project Manager and Maddie Henson, Community Outreach Officer from 4in10 for organising this event. It was a very well-planned event with attention paid to every little detail, plenty of communication, briefings and expectations set (for first timers visiting the Parliament).