Family Fund – Written Evidence (LBC0175)

 

About our organisation

Family Fund is the UK’s largest charity providing grants for families on low incomes raising disabled or seriously ill children and young people.  Last year we provided over 100,000 Grants and services worth over £35 million to families.

We strongly believe that all families raising disabled or seriously ill children and young people should have access to the same opportunities as others. Our support is focused on helping to improve their quality of life, realise their rights, and remove some of the barriers they face.

With grant funding from the four UK governments, trusts and foundations, private donations, and gifted income from our trading subsidiary, Family Fund Business Services, we provide a wide range of items such as essential kitchen appliances, much-needed family breaks, computers and tablets, and more. You can find out more by visiting www.familyfund.org.uk

Background to our research

This response draws upon Family Fund’s current UK-wide research to establish both the short and longer term impact of the Covid-19 outbreak on families we support.

The research aims were:

• To understand how the Covid-19 outbreak is affecting families raising disabled or seriously ill children in the UK

• To understand the immediate concerns and needs of families raising disabled or seriously ill children in UK resulting from the Covid-19 outbreak.

Family Fund conducted two online surveys and a series of in-depth interviews with families we support. The research was undertaken by Family Fund. To date, Family Fund have conducted two waves of online surveys, as well as in-depth interviews with a sample of families.

This statistics and information used in this response is from findings from across the two surveys. The first survey was undertaken between 27 March and 3 April 2020. The second survey was conducted between 30 April and 4 May 2020.

The sample for the first survey consisted of 1,986 families raising 2,700 disabled or seriously ill children. The sample for the second survey consists of 2,531 families raising 3,279 disabled or seriously ill children.

The reduction of formal and informal support: The impact of Covid-19 on Children’s Services

Families reported overwhelmingly negative experiences in this area, with formal support from children’s services significantly decreased. Following five weeks of lockdown, only 11% of families said their disabled or seriously ill child was still attending nursery, school or college. Traditionally, many children’s services are delivered within the school environment, which also impacts on the ability to deliver these services. If schools are unable to reopen properly in the near future, the lack of formal support available to families with seriously ill or disabled children will decrease again.

By the end of April almost two thirds of the families we surveyed [65%] said formal support had declined since lockdown began and social distancing measures were put in place.

The main types of support families were no longer receiving were educational psychologists [78%], occupational therapy [78%], speech and language therapy [77%], physiotherapy [76%], and audiology / ophthalmology [76%]. Worryingly, at a time when children reported higher than normal levels of anxiety, vital services like psychology and CAMHS have been significantly reduced.

The reduction of formal support has occurred alongside a huge reduction in informal support from friends, family and local community. Over two thirds [69%] saw a reduction in informal support such as respite [82%] and play and recreational activities [82%]. Over half lost informal support for household tasks such as gardening, housework and cooking. At a time when families face a significant amount of pressure, over half [58%] said they had lost valuable emotional support.

Support for pupils and families during closures

Despite the overwhelmingly negative experiences in terms of accessing formal and informal support, there was some positive experiences with regards to schools supporting the learning of pupils. The vast majority of disabled or seriously ill children who were not going to nursery, school or college were receiving some form of support [86%].

The most common forms of support families indicated receiving included online and paper resources such as worksheets [49%], support via email [36%], support via telephone or video call [33%] and one-to-one telephone or video calls for their children [23%].

Due to my son’s school remaining open they have sent the main students home... All supported with three video conferences a day and homework packs. Can’t fault them at all”.

Despite a large number of disabled or seriously ill children not being in education, families were fairly positive about the support offered by nurseries, schools and colleges.

The SEN school are good. Phoning every other day to see how we are, gave homework pack, speak to my son . . . I think it’s really good that school are phoning to see how the children are. It’s really good for me and my husband to get support during these hard times. It’s horrific. You realise how much the teachers do and appreciate it. She has given me her direct email address and phone number.”

More than two in five families [44%] rated the support offered by their disabled or seriously ill children’s nursery, school or college as ‘good’ or ‘very good’. A further third of families [34%] said the support offered since the Covid-19 outbreak was acceptable.

However, while there has been positive experiences of home-learning for families, some have reported more negative experiences of support or lack of support being provided to their disabled or seriously ill child/ren.

Of the 86% who received support from their educational setting, 22% thought it was poor. While the majority received some support, 14% of families said they did not receive any support since their child/ren had been at home:

“No support from the school. I am having to print work off and do it at home with him, school will not supply workpacks etc, have already discussed this with head teacher.”

Digital skills and the ability to access homework was an issue for parents. Over half [54%] of families stated they needed additional help for a tablet, computer or laptop to access schoolwork. 16% of families also felt they needed support to educate their child/ren at home.

”The whole school structure work is set on the ‘Show me my homework’ app but without the support and simplifying of work from teachers it’s caused anxiety and meltdown.”

Families felt the offer nurseries, schools and colleges provided could be improved by focusing around more contact, access to digital devices (e.g. laptops, tablets) and making work and activities accessible and appropriate for disabled or seriously ill children.

The impact on children’s and young people’s mental health

The Covid-19 outbreak had an immediate effect on families’ health and wellbeing. The majority [94%] said the outbreak had negatively affected their disabled or seriously ill children’s health and wellbeing, an increase of 6% since the start of lockdown. In particular, they reported worries about their child’s behaviour and emotions [89%], and mental wellbeing [82%]. This included increased anxiety and mood swings, becoming upset and escalating challenging behaviour.

“My little boy who is disabled has huge anxiety problems and doesn’t understand the change in routine. He is suffering and we don’t know how to help him. We’ve seen a huge increase in his aggressive behaviour and lashing out. It’s a struggle to keep his siblings safe.”

“He is restless and full of energy which we cannot release. He is lonely and bored which in turn frustrates him. We are trying our best but his behaviour is regressing rapidly. He screams and hits out for the majority of the day regardless of the effort I put in to ensure he is entertained. We’re at a complete loss of what to do.”

Families said managing their disabled or seriously ill children’s emotions and behaviour was one of their main worries. This has a huge effect on the wellbeing of families already facing a lack of formal and informal emotional support.

“Mental health is suffering for me and my children. We are isolated my family can’t help me physically only on the phone. I have no car and live alone with my children in a small village. My children are autistic and family usually help me with dealing with them day-to-day”.

Financial implication of closures for families

At Family Fund we support the most vulnerable families and those on low incomes. We know these families have few safety nets when faced with additional costs. Long term, with the economy already in deep recession, families with disabled and seriously ill children will continue to struggle, especially if vital support networks are closed again as they were during lockdown.

Families reported increasing costs in food [75%] and energy [63%], exacerbated as children spent more time at home since school closures. 46% of families said they struggled to access food, with 24% of parents having to miss a meal to make sure their child had enough to eat.

“We are unable to get any Government help because he has been working less than a year. We are about a £1,000 a month short and no way of getting any help. This includes paying our rent. Our landlord has not offered any months free either. It's going to be a struggle to put food on the table.”

On top of additional costs, half of families surveyed [50%] saw their income fall since lockdown began. For many, this resulted from loss of employment or giving up work to look after and care for their disabled or seriously ill children.

“We are now in zero contracts as were self-employed and are already on universal credit. We now have nothing and two disabled children at home. It’s awful, we need help.”

Many families do not have savings to cope with reductions and additional costs. Our research found that at the start of lockdown 65% had no savings at all, increasing to 73% with no savings after five weeks.

The devastating financial impact of Covid-19 is further evidenced by a quarter of families [25%] reporting falling behind on bills and credit commitments. These rapid declines in income and extra costs come on top of longer-term reductions in incomes. Findings from our recent Family Survey showed two in five families [41%] had already experienced a reduction in household income in 2019.

Recommendations

The outbreak of Covid-19 has had a huge impact on the families we support. As part of the emergency response to Covid-19, Family Fund received additional funding of £10 million from the Department for Education in May, in recognition of this impact. This has already provided thousands more grants for families on low incomes raising disabled or seriously ill children in the UK this year. Families can apply for grants to help access online learning and safe and sensory play currently missing from their everyday curriculum.

With the advent of local lockdowns and the possibility that any area could be placed under restrictions following a rise in Covid-19 cases, it’s vitally important that services and support, both formal and informal, remain available to families with disabled and seriously ill children. This is to avoid the devastating impact that the withdrawal of these resources had on families during the initial nationwide lockdown.

The recommendations below would significantly help families raising seriously ill or disabled children.

Access to children’s services: A lack of formal and informal support from children’s services has had a huge effect on families. To improve support, families recommended returning to normal provision alongside options for alternative access to services.

We recommend families continue to have access to vital formal services and therapies they have been assessed to receive, such as Occupational Therapies, Psychology, and CAHMS support. Alternative methods such as online or telephone support should be offered when face to face is not possible. The sector needs to ensure families have information on how to access support to ensure they can weather the physical and emotional impact of the crisis.

We recommend families continue to have access to respite support from carers and personal assistants. The pressure of 24-hour care has led to additional stress for families. Care providers have begun to develop services which observe social distancing rules such as support outdoors and booking systems for respite facilities. Examples of good alternative models of support need to be shared with providers to ensure safe care and support services can continue for those assessed to receive it.

We recommend families are able to retain a small network or ‘bubble’ of support around their families where it is safe, to ensure they retain some of the physical and emotional support to enable them to get through any similar crisis in future. Additional guidance/express permission will be needed from Government, similar to the ‘leaving home guidance’ for those with health conditions during the Covid-19 outbreak.

Access to financial support

Families told us it was crucial to have support to buy items which help educate and entertain their disabled or seriously ill children whilst at home. More than half of our families felt that information about grants available to them would be helpful to support through this national emergency. Parents highest priority were tablets, computers and laptops outdoor play and leisure equipment sensory toys and equipment, games consoles, games, books and music.

We recommend families have additional financial support to help with rising costs and loss in incomes for families who are already the most vulnerable. This includes access to support for free school meals and information supplied clearly to families on how to access additional financial support.

Access to digital support

The need for physical and social distancing has had an impact on all of the families we support. All families cited digital technology as a lifeline during this crisis, from supporting with children’s education and free time to accessing vital formal and informal support from services and their own communities. Families on a low income need access to devices, reliable broadband, and items like printers, ink and apps to ensure their children don’t fall behind.

We recommend families are offered support to access digital technology and the skills to go with it with grants or other financial support to ensure those most vulnerable are not digitally isolated, can access information on health and finance, and can access the same home school resources as their peers. 

28 August 2020