House of Lords Communications and Digital Select Committee inquiry ‘Digital exclusion and the cost of living’
The National Network of Parent Carer Forums (NNPCF) is the independent, national voice of parent carer forums. We are run by parent carers with lived experience. The NNPCF is a representative organisation, consisting of up to 152 local parent carer forums at any time across England. Parent Carer Forums are pan-disability. This means each parent carer forum (PCF) includes parent carers from a range of backgrounds with a wide range of experiences in Health, Education and Social Care as their children have a wide range of conditions. We currently have approaching 118,000 members.
Our vision is for the best possible opportunities and futures for all children and young people with SEND and their families.
Our mission is to deliver better outcomes for families living with special educational needs and disabilities (SEND). We aim to create a culture of participation and co-production across the education, health, social care, and the voluntary sectors. This means that we are involved in all aspects of designing, commissioning, delivering, and reviewing services as an equal partner. We empower our members to ensure that their voices are heard at a local, regional, and national level inspire our partners by sharing good practice and knowledge.
This submission focuses mainly on the lived experiences of parents of children and young people (CYP) with SEND focusing on:
As a membership organisation, the NNPCF has based this evidence on reaching out to our networks of Parent Carer Forums through:
How does digital exclusion affect CYP with SEND?
Whilst many CYP with SEND are able to access the digital world, it will always be the case that many CYP with SEND will not be able to access services in the online world, or will need support to do so. Assistive technology increases access for some, yet for others digital services remains inaccessible.
In a digital world, there is a significant risk CYP with SEND may become excluded from society and their communities.
One example is access to education during the Covid-19 pandemic. Whilst schools remained open for those with EHCPs, many choose to stay home, and CYP at SEN support mostly were required to stay home. Many schools delivered online learning, however, it is documented that children with SEN had a variable experience of provision of remote learning.[1] Some of this was due to not all children being able to access materials provided; content was not always differentiated, BSL interpretations or audio descriptions provided.[2] Others were unable to access lessons as they didn’t have in-person support or were not able to access online services rather requiring.
A move to digital educational provision is believed to have been partly responsible for poorer outcomes for CYP with SEND when compared to peers.[3]
Some CYP with SEND are able to access online services, but when there is a “technical glitch” are unable to solve the problem. Online technology does not always work as smoothly as everyone would hope, and the nature of these issues causes further barriers for CYP with SEND.
Furthermore, whilst many CYP are able to access digital technology, having the skills and awareness of potential safety issues, to access services can be a challenge. Processes such as two-factor authentication can be too challenging and confusing for people with SEND, as can the amount of information required to make purchases. Staying safe online, as well keeping personal details safe, can be challenging, and it may be safer for some CYP with SEND to not have access to online purchasing or banking. This then leads to further digital exclusion.
For some of our families, the CYP with SEND will not be able to access any digital services due to the nature of their needs. In-person options will always be required for them, and moving to online only provision risks exclusion in society.
As services for SEND move online, this can mean CYP with SEND whose families do not access the digital world may face further exclusion. Currently, each local authority has a “Local Offer” of services for CYP with SEND which is online based, those who are unable to access it are not able to access this information. The SEND and alternative provision improvement plan[4] outlines plans to make Education, Health and Care Plans digital in the future. Whilst this is welcomed by the NNPCF, care must be taken that those who do not have access to digital technology are not inputted from co-production into their child’s plans. Furthermore, a reliance on digital platforms to produce Education, Health and Care plans must not reduce engagement with parent carers nor make it harder for them to input into their child’s plans.
Obstacles for greater digital inclusion for CYP with SEND
Whilst a digital world and accessible technology can open opportunities for CYP with SEND, there are still many barriers to greater digital inclusion.
In our feedback from our membership, PCFs reported parental digital skills were a further obstacle for CYP with SEND being digitally included. Some parents may have SEND themselves, which not only reduces their ability to access the online world, but also their ability to support their CYP to access a digital environment. For these families support needs to be given both to the CYP and the parent carer, to ensure any digital barriers are broken down.
Digital systems are not always simple to navigate, and even the most IT literate can still struggle to access systems which they are not familiar with. CYP with SEND and their families will need support to access these systems, especially as Education, Health and Care Plans move into the digital arena.
PCFs report many services being only available in English, with an expectation users will use technology to translate the information for themselves. However, without the digital skills to use translation software, many parents of CYP as well as CYP themselves, find themselves unable to access information online.
Many CYP with SEND need in person support to access digital services and the availability of this varies between schools and areas of the country. Some CYP with SEND may struggle to navigate the internet to log on to the appropriate digital service. Families may not have the digital skills to help them particularly if supported by older relatives. Digital services are not necessarily able to determine why people are struggling and so digital supporters in a digital world may not be able to efficiently help CYP with SEND online.
CYP with SEND also need digital services to work seamlessly with any accessibility software they may have, which is not always the case. Some report having sophisticated equipment at school e.g. eye gaze, or sip and puff, which they may not have access to when not in educational settings.
Some CYP may feel negative effects from using digital screens which may make them further excluded from the digital world. Others may struggle to get information from a screen written down on a piece of paper.
How additional cost of living pressures for families with a CYP with SEND increases digital exclusion?
Families of children with disabilities face significantly more financial pressures than other families. Many families with CYP with SEND are already having to reduce their use of life-saving electrical equipment as well as heating[5] and are likely to be reducing their use of digital devices in order to save money. Whilst some technologies are available in educational settings, families may find themselves unable to afford them in the home.
Adaptive technology can be very expensive, and whilst it can enable entry into the digital world, the cost can be prohibitive for families, especially when having to deal with rising costs of living.
The additional costs of living for families of CYP with SEND, also means families are having to make the decision between charging phones and having phone credits, or feeding their child. Without access to the internet they may be unable to access support services or information about how to support their child.
What does the NNPCF want to see?
The NNPCF recognises how digital inclusion can help many families of CYP with SEND access information and services. However, the NNPCF is aware many families may not have the skills and/or the means to access the digital world and are facing additional cost of living pressures compared to the rest of the population.
The NNPCF would like to see increase support for families living with CYP with SEND, and the CYP themselves, to access online services where it is required. We would also like to ensure families with CYP with SEND who are not able to access the digital world do not face further barriers to inclusion in society for either themselves or their CYP.
7 March 2023
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[1] Learning from the COVID crisis for educating children and young people with SEN/disabilities - 2021 - Journal of Research in Special Educational Needs - Wiley Online Library
[2] Learning from the COVID crisis for educating children and young people with SEN/disabilities - 2021 - Journal of Research in Special Educational Needs - Wiley Online Library
[3] Learning during the pandemic: the context for assessments in summer 2021 (publishing.service.gov.uk)
[4] SEND and alternative provision improvement plan - GOV.UK (www.gov.uk)