Parents’ priorities for reform of support for children with special educational needs

On 13 March, eight parents from across Britain came to Westminster for a meeting with the education secretary. All are parenting children with SEND while living on a low income, and shared their experiences and their calls for change with the education secretary, advisers and officials. Two more parents who could not be there in person had speeches read out on their behalf. This article brings together excerpts from these speeches.

The impact of cuts

The meeting fell less than a week before the government published its green paper on disability benefits reform, and two weeks before the spring statement when further cuts were announced. With rumours swirling about what the cuts would mean at the time of the meeting, Evette opened the session with a powerful case for why they would hurt families like hers.

Evette

I live in the north of England. I am a disabled single mother of two and a participant in Changing Realities. Both of my children have special needs.
The government's plans to cut £6 billion in disability benefits in the near future is being flagged extensively in the media at the moment and is causing me great concern, because I’m also using my PIP (personal independence payment) to pay for my son’s support. Hence, I often worry about the impact that losing my PIP money would have on me and my family, because if I lose it, I won’t be able to support mine or my son’s additional needs anymore either.

I understand that it is also part of the government's plans to get a large amount of people on disability benefits (like myself) off of these benefits and back into work, but finding and maintaining a job will be very challenging for some of us parents with SEN children because we have to attend lots of different appointments during the day. These appointments are not only for ourselves and our adult issues, but for our children too.

Parenting a child with SEND on a low income

Parenting a child with SEND can be hard. Doing it on a low income brings additional challenges, which Caroline and Jolene highlighted.

Caroline

I am a single mum to one child with potential undiagnosed SEN requirements. Undiagnosed because waiting lists are years long, and we’ve been refused CAMHS [child and adolescent mental health services] because the referral came from our GP, rather than the school.

My child has adverse childhood experiences due to me being in an emotionally abusive home in her early years. She is in secondary school now, and is what is ‘labelled’ as a school refuser. She doesn’t refuse to go to school – she quite simply is unable to go. We could be going out the door and it just hits her, she freezes and cries and I'm left with no alternative but to leave my 14‐year‐old at home upset and annoyed with herself, whilst I continue on my journey to work. Can anyone even begin to try and understand how that feels? Just this week, I had a text from her because she was in distress at school, whilst I was at work supporting SEN kids myself. I wish I had the funds to get her an official diagnosis but I can’t afford it and I don’t even know if school will accept it. School funding has been cut and they are ‘rationed’ to the amount of statements they can introduce each year.

Jolene

I am an autistic and ADHD mother of three wonderfully neurodivergent children. I now work from home part time for Save the Children. A few years ago I was plunged into poverty when I was forced to give up my job of 20 years due to my children being denied the healthcare and education that would have enabled them to meet their full potential.

The increased stress of navigating systems that are supposed to support while managing tight budgets makes it extremely difficult to meet the needs of my children and at one point drove me to the point of considering suicide.

You don't have the same options of support when your child is different. My autistic child has ARFID, an eating disorder which means she is restricted in the food she can eat. Food banks don't cater for this so I was forced into debt to feed her. If a child isn't given a school placement that meets their needs, they are also denied access to free school meals and the family faces increased costs in cooking and heating the home.

Getting the right support from the education system

Getting the right support from the education system and other public services is vital. Jade and Ella set out the challenges they have faced, and what would help.

Jade

I have multiple sclerosis and I am unable to work. I am a single mum to two children, Sofia who is 18 and has autism, and Gianni who is 14 and has ADHD, dyslexia, dyspraxia and mild autism.

Sofia has been waiting four years for an official diagnosis. Her high school said she was on a waiting list. All forms were correctly filled. Each time I called, I was fobbed off and told she was on a waiting list. On the day after her GCSE exams, I received an email from the school saying the SEN co‐ordinator had spoken to her teachers and “there's nothing wrong with her”. So the forms were discarded. This is after two years of me asking for updates. Girls are very good at masking autism and good grades do not mean she wasn't struggling incredibly with socialising, emotions and being in a loud busy environment. So the process has started again in college where forms were filled as she's waiting to be assessed.
A similar situation has happened with my son Gianni. The school has lost his forms twice. And apparently he is now on a waiting list to be assessed, which has taken a year and a half. So far without assessment, the school is not providing adequate care. Like timeout areas, extra time in exams and a computer for his dyslexia.

Parents get desperate at this point and many feel the only way is to get a private diagnosis. My friend paid £1,500 five years ago for this. No doubt that figure has risen by now. So children from poorer households as my own are definitely being left behind.

Ella

I am a parent of two children currently in primary school, who struggle with dyspraxia, GDD [global development delay] and complex needs. SEN parents and their families have been living at crisis point for far too long. Every meeting I have had, and every SEN parent I have ever met is in agreement that nine times out of 10, there is no guidance on which ‘pathway’ your child is on, or what support is or isn’t available to them. A lack of clear information leaves parents feeling lost in the system. The support available is inconsistent, which means we are living in a postcode lottery which is failing monumentally. The unfortunate truth is that without a diagnosis, children and families are left in a grey area – somewhere between being noticed and ignored. In the interim those families and children need support, rather than being left in limbo.

There is a lack of government support, for example, with school uniform costs. SEN children often have complex needs, as an example my daughter’s developmental disorder and dyspraxia grossly impacts her co‐ordination so we are on our fourth pair of school shoes since the start of the year.

Parents need support to navigate this treacherous journey. They need helpful, accessible information condensed into one place. We need more SEN assistants in classrooms. We need family liaison staff who can guide parents through the SEN minefield, and an understanding that not every family can afford to ‘go private’ to achieve a diagnosis of their child.

Recognising the pressures on parents of SEND children

The pressures on parents of SEND children can be great. Our social security system and workplaces must recognise and be responsive to these pressures. This is not currently happening, as Helen and Tayyaba explained.

Helen

I’m a single solo mum from Newcastle and I have an eight‐year‐old autistic son. I’m in the final stages of training as a child psychotherapist and work as a counsellor for neurodivergent young people. The majority of our caseload are not currently able to access education. I also work part time as a special needs teaching assistant.

As a SEN parent, life can be lonely, isolating, abusive, exhausting and relentless. I wouldn’t swap places with anyone though but we need workplaces to be mindful of this.

I work very hard to make our life work. I prioritise the needs of my child above everything!

Other than ‘home’ my son’s other happy place is school! I have an amazing relationship with the staff and we all work collaboratively to meet his needs. They have absolutely gone above and beyond to make sure he thrives. His attendance to date is 97 per cent.

He currently has a 1:1 TA [teaching assistant] throughout the whole school day. This costs £20K. The school is expected to fund the first £6k and the Pupil Premium allowance and Individual Pupil Support Fund contribute an additional £5.5K. This leaves a shortfall of £8.5K.

So at present ‐ everything is going great! My worry is the future!

My son’s school can’t operate with a financial deficit and if the school has to sacrifice his TA, I could have a traumatised, dysregulated child that can’t attend school. This means that I am no longer able to work.

So my ask, obviously, is that there needs to be more money within the system to meet the individual needs of the children with SEND.

Tayyaba

Let me tell you about my world, my universe, my son. I am a single parent of a teenager. When he was in primary school he had 100 per cent attendance and was well mannered. The primary school teachers still praise him.

Year 7 was a big transition to a new phase of life. My son witnessed domestic violence against me by his father at a young age. He was beaten and bullied in Camden school twice. I had to fight with the system to get the new school. He is struggling with physical and mental health.

Throughout this time I have been a key worker for the NHS, sometimes because of the nature of contracts I have been receiving benefits while looking for a new job.

Employers and the Jobcentre need to understand the challenges that parents of children with SEN face. Parenting a child with SEN requires constant attention, adaptability and emotional resilience.

Today I would ask for a broader recognition from government of the ‘work’ involved caring for children with SEN. Give parents of SEN children more paid leave to attend medical appointments, therapies, and school meetings. Require employers to consider flexible working for parents to balance work and caregiving. Develop childcare options for older SEN children and teenagers, filling the current gap. And end conditionality and sanctions to ensure benefit rules don’t unfairly penalise parents of SEN children.

As Dr. Haim Ginott said: “Children are like wet cement. Whatever falls on them makes an impression.”

Childcare is vital

As Tayyaba mentioned, suitable childcare is vital for parents with SEND children. Sam and Jo’s speeches focused on what changes are needed so that children are supported and parents can take on paid work if appropriate.

Sam

The childcare cap [in universal credit] is capping parent’s ability to work and is a barrier to single parents entering employment. This is impacting child poverty as either parents are not able to enter the workforce or they have to limit their hours, or self‐fund childcare during school holidays. The childcare cap is penalising the most financially vulnerable households in low‐income jobs that do not offer flexible working arrangements or work from home options. The childcare cap fails to take into account the burden of additional childcare payments for school holidays and inset days. It needs to be increased immediately. A rise in childcare allowance would have a huge impact on my son and I, instead of having to save money to pay for the additional childcare which isn’t funded during school holidays, we might be able to use the money for a holiday or other meaningful activities.

A childcare provider is under no obligation to offer a child with SEND needs a place. They are able to do this by asking if your child has SEND, if you say yes they ask for further details and then if they believe that they cannot meet your child’s needs they can refuse a place. Parents of children with SEND face many challenges, and the near impossible task of finding appropriate childcare is a barrier to employment.

Jo

When returning to work after my maternity leave, I had numerous difficulties in finding childcare. Not only as I needed a 6 am start, which meant paying double time up until 8:30 am, but also in holding a childcare place. Early on my son had speech problems so couldn’t communicate as effectively as other children. Although it was never directly said, I know this was the reason for being sent home sick when he wasn’t, resulting in me losing pay at work, still having to pay for the childminder and having numerous disciplinaries. I solely relied on a childminder as a single parent, then the childminders didn’t want to start work as early. I went through four childminders in one year. At this point I had had enough and thought ‘I’m going to train to be a childminder’, so I contacted my local council and started an evening course. Then it became apparent through the training that there was no additional information provided on children with special educational needs. There was no extra support. There was no training or legislation on how to care for children with additional needs and no incentive around keeping children on even though they may be a little more work.

I believe a good policy could be to include extra training for childcare providers around children with special educational needs and also to provide an incentive for childminders, some extra government funding such as schools receive for extra equipment and support also to include an incentive for retaining children.

Reflections

Sahar closed the session, reflecting on what had been raised. Sahar wants to see more support for teaching staff, more support and information for parents delivered through schools, and more done to tackle poverty so that parents can support their children with SEND whatever their circumstances: whether or not they’re able to work, and whether or not their immigration status allows them to work, because children have needs regardless.

The education secretary took away our recommendations, and we hope to follow up this meeting with more discussions with officials so we can continue to influence important reforms to how children with SEND are supported.