Written evidence submitted by Family Fund

(SFC0024)

This evidence submission outlines some of the wider support available to young people with special education needs offered by Family Fund, why this support is necessary and what the positive outcomes for children and young people are, alongside an assessment of how sufficient the support is relative to need.

Family Fund is the UK’s biggest charity providing grants to families raising disabled or seriously ill children and young people on a low income. In England we receive £27 million a year from the DfE under the Support for Families with Disabled Children programme. This is the main source of funding for our programme in England and is part of the DfE’s wider work supporting families with disabled children. With this we support over 60,000 families per year[1].

We use our own bespoke eligibility model based on the social model of disability taking into account the child’s care needs as assessed by a highly experienced team of decision makers. As such not all children who need an EHCP will be eligible for support from Family Fund; conversely not all children and young people supported by Family Fund will have an EHCP. We estimate that 87% of disabled and seriously ill children we support have (or are in the processes of getting) an EHCP[2]. A such our support is targeted at a heavily overlapping but not identical cohort of children with special education needs to those children and young people with an EHCP.

Our research shows that families raising a disabled or seriously ill child face multidimensional financial challenges. Parent/carers experience significant barriers to work as a result of their caring responsibilities, with just 7% of parent/carers able to work as much as they would like[3]. Families also struggle with increased day to day costs, for example higher wear and tear on children’s bedding resulting in costs which can be as much as three times the costs faced by otherwise similar families whose children are not disabled or seriously ill[4]. All this means that families can struggle financially, with 64% of families telling us that they are unable to regularly put aside just £10 a month for emergencies[5]. Support from Family Fund can make a huge difference, with 80% of families telling us that they would strongly recommend Family Fund to families like theirs[6].

Our model is based on the understanding that parent/carers know what their family needs, so when parent/carers apply to Family Fund they can apply for the item they need the most for their children, subject to our budgetary envelope. This reflects our understanding of the reality of family life for families raising disabled and seriously ill children and that every child and every family needs something different to support their child to thrive. Commonly requested grant items include short breaks, tablet computers, trampolines and specialist sensory toys amongst a huge range of options.

At Family Fund we work hard to centre the lived experience of families in all of our work, and we know making a grant isn’t just giving families “stuff”; but can be of huge importance for the development and wellbeing not just of a disabled or seriously ill child or young person but also for their entire family.

In November 2023 we shared some of the stories of parent/carers and the difference play and leisure items made to their daily lives at a reception we hosted at the House of Commons[7]. Parent/carers told us of the difference having these items made to their children:

“He has sensory processing disorder and he needs physical movement at all times. Or a big chunk of physical movement. So as long as he’s got that physical activity it can enable him to regulate his sensory needs, to then go about his daily tasks or daily routine. He tends to go on the trampoline in the morning before breakfast so that he can then get that sensory input so he can sit down and have breakfast.”

For children with a disability or serious illness self-regulation can be more challenging than for children who do not have a disability or serious illness. Of course, it is not just better self-regulation that getting the right item can enable, it is whatever a child or young person needs, and nobody knows better than their parent or carer what that is.

99% of parent carers tell us that their disabled or seriously ill child or young person benefits from their grant item, with particular benefits in terms of mental health for 44%; physical health for 21%; and general wellbeing for 67%[8]. 61% of disabled and seriously ill children benefited in their education and learning as a result of their grant item[9].

Our status as a charity and the option to select the item that will help you best in your current circumstances allows us to engage with families who may be unable or unwilling to engage with other support. In the past twelve months we have delivered 69,741 instances of information and support to parent/carers to enable them to understand more about what is available to support them and their families[10].

We hope that this brief overview of our work has highlighted to the committee that important support for children and young people with special educational needs does not just come through EHCPs, but wider support particularly targeted at families on the lowest incomes has significant benefits for children’s health, wellbeing and development.

We believe that by offering targeted grants and support to families on the lowest incomes to access whatever it is that they need for their child to thrive, we can improve outcomes for disabled children and young people and support their parent/carers to continue in their caring role. This is an important and valuable element of how government can support children with special educational needs. After all, all children spend more time at home than at school and enabling the home environment to provide for the needs of the child can benefit children and young people immensely; and having the right support at home can potentially lead to cost avoidance elsewhere in the public sector.

Currently funding restraints mean that we are only able to support a fraction of the around 480,000 families in England we estimate to be raising a disabled or seriously ill child on a low income[11]. When assessing the sufficiency of support for children with special educational needs we think it is essential that the fundamental importance of support for the family and home environment is not forgotten and the vital role of the voluntary sector in delivering this support in an accessible way to parent/carers is recognised.

November 2024