About Carers Trust

Carers Trust works to transform the lives of unpaid carers. We partner with our UK-wide network of 130 local carer organisations to provide funding and support for unpaid carers. We also deliver innovative and evidence-based programmes, raise awareness of issues affecting carers and influence government policy. Our vision is that unpaid carers are heard and valued, and have access to support, advice and resources to enable them to live fulfilled lives. Our network of local carer organisations reaches over one million carers each year.

Carers Trust hosts the Young Carers Alliance, a network of over 200 organisations and 700 individuals committed to improving identification of, and support for, young carers and young adult carers. It also hosts the Scottish Young Carers Services Alliance, an informal network of 51 young carers services across Scotland.

Support for children and young people with special educational needs

When considering the support available for children and young people with special educational needs, we would ask the committee to ensure it also considers the impact a lack of support has on their parents or siblings.

Impact on parents

Many parent carers find they are unable to work, or have to reduce their working hours as a result of their caring role. Almost half (49%) of respondents to a survey by Support SEND Kids had to reduce their working hours or change their role when fighting to get the correct EHCP provision for their child. 41% of respondents had to give up work completely.

60% of respondents identified that extra support from their child’s school or Local Authority would help them to remain economically active[1]

A lack of support for parent carers can have a significant impact on their own health and wellbeing. Research by Dr Siobhan O’Dwyer, Associate Professor at University of Birmingham found that 41% of the 750 parent carers surveyed had thought about suicide, whilst one in twelve said they had made a plan to kill themselves. Some had attempted to take their own life. Only half of those who had thought about suicide had ever told anyone or sought help.[2]
 

Impact on siblings

If a young person with SEND does not receive the support that they need, then this can also impact on any siblings they have, and particularly their education.

A survey of 200 young siblings by the charity Sibs found that:

-          66% of children had told a teacher about their sibling situation

-          74% didn’t receive any help from school to support them as a sibling

“I really want to play with my own friends, but I can't because I have to look after my brother.”[3]

In our 2024 report, ‘Caring and classes: the education gap for young carers’ almost half (48%) of all young carers surveyed reported having been bullied in the past year. Sibling young carers told us about how they were bullied because of their sibling in the same school.

“It’s really hard hearing other students use ableist slurs all the time and teachers not really doing anything about it or in a couple of instances joining in! If I try to stick up for my sister, they then start saying things about me.” Young carer

Even where a young person is eligible for an Education, Health and Care Plan, pressures on school resources mean that support for the young person can often rely on the help of their sibling in the school. This was an issue highlighted by the All Party Parliamentary Group (APPG) for Young Carers and Young Adult Carers in its inquiry into life opportunities for young carers:
 

“Young carers told us they find it difficult to concentrate in school, with their minds worrying about what is happening at home. They are often tired, stressed and anxious at school due to their caring role, which can impact their educational performance. They frequently experience disruptions within their school, being called upon to support a sibling or contact their family.”[4]

Hannah’s story (the names have been changed. The young person whose story this is has said she would be happy to give evidence to the committee or meet committee members to share her experience if this would be of use)

Hannah is 20 and has been a carer for her younger sister, Suzie who had hydrocephalus (a neurological condition), a form of cerebral palsy, visual impairment and anxiety.)
Suzie went to the same school as Hannah in the year below and had a full Education, Health and Care plan (EHCP), so should have had a teaching assistant supporting her all of the time. Due to staffing pressures at the school, Suzie’s teaching assistant would often be used for other pupils who did not have EHCPs but still needed support. This meant that Hannah would often have to help Suzie with getting between lessons and support her if she was anxious or upset. There were multiple occasions where Hannah would have to help provide physical care to Suzie at school. Hannah spent virtually every breaktime with Suzie, as it took time to convince her to have a drink or to make sure she had eaten. This meant Hannah was not able to spend time with her own friends, or to spend time completing homework or revising, something which she often struggled to find quiet time for at home.

On one occasion, just as Hannah was about to go into an important French GCSE mock speaking exam, one of her friends saw Suzie crying and so found Hannah who had to go and support Suzie. Hannah ended up having to rush from helping Suzie straight into her speaking exam.

Support in the school holidays

Support for children with SEND can be particularly challenging for parents in the school holidays.

Research by the Disabled Children’s Partnership and Contact in 2023 found that only 10% of parent carers found a holiday club suitable for their disabled child in the summer holidays, and just 4% said they had found something for the days and hours they need. In addition,

-          34% of parents said they don’t work because of a lack of childcare including holiday clubs.

-          78% of parents feel stressed and anxious due to lack of holiday clubs for their disabled child in the summer.

Over a third of families reported in the Disability Children’s Partnership/Contact research that holiday club providers cannot meet their child’s needs. This aligns with what parent carers have told us directly:
“They tell me [my son] needs 2:1 or even 3:1 support which [holiday club provider] cannot provide – yet when he’s at home, it’s just me and I get no support. How is that fair?”

This lack of holiday provision can also have an impact on siblings who have to look after their sibling whilst their parent(s) is at work. Research by Carers Trust and Action for Children in 2023 found that over a quarter (26%) of young carers will spend more than 10 hours on a typical day over the summer holidays caring.[5]

Aditya’s story

‘My feelings about summer holidays are always a bit mixed. I like spending time with my brother. But really, after a few days, I find my caring hours have doubled and in some cases they may have even trebled. So, in that sense it’s something I’m not really looking forward to.

'During the summer holidays because of how my caring responsibilities grow and how I'm probably going to be in the house most of the time, it's obviously very difficult for me to find time to go out with friends or even meet them for a short period of time. So, in that respect, I'd say that it can be a bit lonely. I see everybody else doing it and naturally as a 15-year-old you're going to feel a little bit jealous.’

“Both of my parents need to work, so it means in the holidays, I am the one who has to look after my sister because she cannot be left on her own” Young Carer

Support for parent carers and siblings of children and young people with SEND

Under the Children Act 1989 (as modified by the Children and Families Act 2014), local authorities are under a duty to provide carers assessments to parent carers[6] and young carers[7], if there is an identified need, or if the carer requests one. These assessments are required to cover topics such as whether the carer is able to access employment or education opportunities and consider the parent’s own wellbeing.

Ten years on from the legislation which introduced these statutory rights for carers, Carers Trust and the We Care Campaign have undertaken a piece of work asking carers, local carer services and local authorities how well these rights are being reflected in practice.[8]

Parent carers and local carer services from across the country highlighted how parent carers are not able to get assessments of their needs and how support is often not available for them.

“I’ve asked three times for a Carer’s Assessment and been fobbed off with different excuses every time… I know the council doesn’t have the budget to fulfil its legal obligations to unpaid carers and the only chance you stand to get any help is if you shout loud enough, persistently! And I’m perfectly capable of standing up for myself - but I’m tired! I’m exhausted from four hours sleep a night, double the washing everyone else has and the constant stress of sliding further into debt every week. I have no money, no social life, no energy and my marriage is on its last legs. My son is 16 and was registered disabled aged 5 and yet I still have to fight constantly for every bit of help that my local authority should be providing by law! The system stinks, and it’s sending me to an early grave.” Parent Carer

“We were contacted by a parent carer looking after three disabled children. None of them reached the threshold for support in their own right, but the impact on mum was huge. It was only when we highlighted a real suicide risk with mum that the local authority were prompted into action, rather than continuously passing mum between early help, education, children’s social care and the children with disability team.” Local carer service

“We’ve seen a huge spike in parent carers – around 40% of referrals are parent carers who are often on waiting lists for assessments or support for their child. We work with parent carers stuck in the void.” Local carer service

“In our area, the council have support for carers of adults with disabilities, support for young carers, but not for parents of disabled children. I feel we are both neglected and unsupported” Parent Carer

“We have raised the issue of Parent Carer Assessments for literally years and have over the years had lots of examples of carers going round and round the houses to get nothing, and pretty much give up. The amount of energy spent on passing the buck could have been so much better spent and it's incredibly frustrating.” Local carer service

One of the issues highlighted by local carer services is the lack of accountability and focus on parent carers and their needs as carers at a national level. Despite local authorities having legal obligations towards parent carers for ten years, the Department for Education have not produced guidance relating to Parent Carer Needs Assessments.[9] Ofsted only added young carers to their Inspecting Local Authority Children’s Services (ILACS) inspection framework[10] at the start of 2024. The framework makes no reference to the duties towards parent carers.

The APPG for Young Carers and Young Adult Carers inquiry also highlighted the issue that in some local authority areas, sibling young carers are not able to access assessments or support.

Suggestions to improve the experience of parents and siblings of children and young people with SEND

-          All education settings should be required to have a young carers lead and young carers policy, so that sibling young carers know what support is available.

-          All local authorities should ensure that there is a clear pathway for assessments and support for parent carers.

-          Ofsted should add parent carers to its ILACS framework and ensure that local authorities are asked how they are meeting their legal duties towards parent carers in inspections of children’s services

-          The Department for Education should produce guidance to support local authorities in meeting their legal duties to parent carers.

-          The Government should ensure that the needs of parent carers and siblings are specifically considered, and their voices are heard, in any work it undertakes to improve the SEND system.