Written evidence submitted by Sense
The Impact of Covid-19 on Education and Children’s Services – Education Select Committee Inquiry
Sense is a national disability charity for everyone living with complex disabilities. Sense is here to help people communicate and experience the world. We believe that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfil their potential.
Sense Specialist Services for Children and Young People supports around 1400 children and young people with multi-sensory impairment (MSI) and or complex disabilities. The current public health emergency has put unprecedented pressure on children and young people with MSI and their families. Sense is concerned about the impact of Covid-19 on the ability of parents and families to support their children with MSI in safe way, meeting their education, health and social care needs, as well as the longer term implications of delays to reform the special educational needs and disabilities (SEND) system that this public health emergency may cause.
At Sense our specialist children and young people’s services have informed us that being unable to access school has had a significant impact on many young people, especially those who need time to adjust or transition to new routines. There has been a notable increase in challenging communication behaviours as a result of this sudden change.
These behaviours are as a result of anxiety and/or limited communicative strategies to express thoughts or access information. A combination of the speed of the changes with no time to prepare, difficulty in comprehending what is happening, no clear timeline of when they will return to school, lack of support from external agencies (due to shielding), loss of interaction with others, loss of support from intervenors and support staff and reduced connections with others, makes this a very challenging situation for disabled children and their families. For many disabled children their interactions have been limited to their household, as they cannot access technology, and there are often only a small group of people who can meet their communication needs. Shielding at home can mean a reduction in positive interactions, as well as affecting mental health and well-being. Many of these children have complex health needs, and will continue to have to shield and will not be able to safely return to school or respite support. Therefore, it is vital that Government urgently addresses the need for a long term plan for SEND provision and support for disabled children over the next six months.
On 1st May notice was given from the Secretary of State for Education issued under the Coronavirus Act 2020 to modify section 42 of the Children and Families Act 2014. This temporarily relaxes the legal duty on local authorities or health commissioning bodies (CCGs) to secure or arrange the provision set out in an Education, Health and Care (EHC) Plan down to a duty to use ‘reasonable endeavours’. The Notice is in force until the end of June, having just recently been extended.
In addition, there was the introduction of the Special Educational Needs and Disability (Coronavirus) (Amendment) Regulations 2020. This temporarily amends four sets of Regulations that specify legal timescales applying to LAs, CCGs and others, mainly around processes relating to EHC needs assessments and plans. The changes to the regulations will be in force from 1st May to 25th September 2020 and they will be kept under review.
These changes mean that the Secretary of State for Education has been able to vary provisions of the Children and Families Act 2014. This includes the core duty to procure provision set out in an Education, Health and Care Plan (EHCP), so instead of being an absolute duty it becomes a “reasonable endeavours” duty, creating a lesser entitlement subject to review by the Secretary of State.
We have concerns about the impact of the transition to “reasonable endeavours” duty and EHCP timescales shifting to “as soon as reasonably practicable”. Although this is intended as a short term solution it is very unsettling for the children and young people we support and a source of considerable anxiety for their families and carers. Our children’s specialist services are very concerned about the extension of the Notice until the end of June, as many children may face returning to school without the appropriate support in place. Changes or reductions in provision or support has the potential to have a lasting impact on the outcomes and well-being of children and young people with complex disabilities.
The new SEND guidance states that any return to school by a child with an EHCP or SEND needs “should be informed by their risk assessments, to help educational settings and local authorities ensure that the right support is in place for them to come back”. However, with the ‘reasonable endeavours’ duty in place for the foreseeable future, it is worrying that Local Authorities may not be prepared, equipped or have the necessary funding and resources to undertake appropriate risk assessments. Therefore, we are concerned that the endeavours to discharge the risk assessment and EHCP will fall on schools rather than education, health and care working jointly to find alternative provision solutions.
We are pleased that the guidance recognises the need to involve the child or young person as well as the family in the risk assessment process. It is essential that schools, CCGs and local authorities undertake a risk assessment that should determine whether or not the child could still continue going to their preferred school or attend education at all. This should include the risks to the child of Covid-19, their needs and outcomes, the impact on wellbeing and the risks to the child if some or all of the EHCP provision can’t be provided at school or at home.
It is important that these risk assessments take account of the transition process for a child or young person who may find returning to school unsettling. Risk assessments must also evaluate the impact of new rules regarding social distancing on the well-being of children and young people with complex disabilities, who may not be able to understand the changes and would find the new routine around reductions in physical contact and hygiene practices distressing. This is particularly crucial in the absence of additional specialist support, many children and young people will need more support to adjust to school, and our specialist services have been informed by schools that they will actually have a reduction in specialist staff visiting schools during the coming months. We also have concerns these risk assessments will overtly favour keeping a child at home rather than making reasonable adjustments, and meeting the needs and provision in school. Risk assessments must ensure that the appropriate staff will be available and that returning to school will not have a negative impact on the outcomes, well-being and communication needs of the child or young person.
We have considerable concerns about the lack of guidance around tactile interactions, personal care and Personal Protective Equipment (PPE) in schools. Many children and young people who are deafblind communicate through touch and tactile sign. The guidance recommends reducing tactile interactions where possible, but this will not meet the needs of many children with MSI and or complex disabilities. We are also worried that the guidance around PPE for personal care support is insufficient, including procedures like tracheostomy, ventilator and gastrostomy support. Many children and young people with complex needs require this type of personal and medical care support at school. Therefore, teachers and support staff should be provided with appropriate PPE to protect themselves and children with complex medical conditions from risks of the virus.
Most of all we are concerned that the current guidance doesn’t appropriately recognise the needs of those children who have complex health conditions, who are currently shielding and will be unable to return to school in June. Our specialist services have informed us that many families who have disabled children or young people shielding at home have received no risk assessment or alternative support from their local authority. This is a source of serious concern, it is vital that children and young people with complex disabilities who are unable to return to school due to the need to shield receive a risk assessment and an appropriate package of support and educational provision at home.
Our services report significant levels of variation in the support available to children and their families. We remain concerned that the guidance will embed the postcode lottery of SEND provision across the country with a generation of disabled children missing out on their education. Government must revise its approach of local solutions to these challenges and create an appropriate guidance framework for risk assessing children and young people who have complex disabilities, especially those who are shielding. It is vital that now the law has changed Local Authorities use an appropriate framework for reasonable endeavours alongside risk assessments to find the best solutions for SEND provision.
Sense specialist services are working remotely with families to try and meet support needs. However, for many children with complex disabilities remote solutions are not appropriate. For example, deafblind children who need tactile interactions to communicate and learn. This is leading to increased social isolation.
Many of the educational resources and specialist support children with MSI need cannot be replicated in the home. Accessible resources like Braille, Easy Read and Picture Exchange Communication (PEC) symbol systems aren’t affordable or available to families at home to continue learning and outcomes. For disabled children in mainstream provision, especially those with sensory impairments, a lot of the workarounds like online classrooms and video conferencing learning are inaccessible. Similarly, disabled children often rely on specialist interventions for example Teachers of the Deaf (ToD), Qualified Teachers of the Visually Impaired (QTVI) and Qualified Teachers of the Multi-Sensory Impaired (QTMSI). These interventions, like British Sign Language support, must continue when children return to school. Our specialist services believe that many children with complex disabilities will now need additional support due to the impact on outcomes and well-being due to lockdown and social isolation. However, our services have been informed by many schools that specialist support, including Sense staff, QTVI, ToD and QTMSI will not be allowed into schools due to social distancing rules. It is vital that the risk assessments take into account the impact of a lack of specialist support for a disabled child if they return to school. Therefore, for those children and young people that can return to school when appropriate, it is vital that schools have guidance about alternative specialist provision and additional funding for SEND support. This will be crucial so that disabled children can catch up on missed learning time and specialist interventions, and continue to receive the additional support they need.
However, there is a cohort of children with complex disabilities who are required to shield due to health needs. This group cannot safely return to school for many months and require specialist support to continue achieving person centred outcomes. This is especially the case for learning independent living skills, sensory interactions, and specialist therapies. It is essential that the children and families who have to shield for the long term are given the care and support they need to continue outcomes in the home. Local Authorities and CCGs must work jointly with schools and make reasonable endeavours so that children who have EHCPs and are required to shield can have the resources, equipment and therapies that they need. This process must be about both the individual risk assessments and EHCPs, but also national long term planning and funding for the next 6 months about how reasonable endeavours can practicably work.
Many children with complex disabilities access therapies and equipment through school, including physiotherapy, speech and language therapy and communication devices, like eye gaze computers which allow children to express choices and wishes. We are concerned that in the absence of SEND provision at school, that disabled children and young people may be without the therapies, resource and equipment they need to stay healthy, safe and happy.
Whilst Sense has heard that many Local Authority Sensory Services are sending equipment such as radio aids home to children, this is not consistent practice across the board. It’s vital that things such as insurance coverage do not present barriers to equipment being taken home from school which is vital to supporting children with MSI to communicate. We are pleased that the SEND guidance recognises the need for children and young people to have access to the equipment they need, especially those who will be shielding at home. It is essential that schools and Local Authorities work together to urgently get this equipment sent to families.
It is important that schools, Local Authorities and CCGs find alternative means of providing therapies, either remotely or in the home. The absence of physiotherapy or speech and language therapy can have a significant long term impact on physical and mental health and well-being. For those children and young people unable to access their usual therapies through school or in clinical settings, it is vital that CCGs, schools and Local Authorities find alternative community or at home provision.
A family got in touch with Sense as their child’s Bone Anchored Hearing Aid (BAHA) has stopped working. The family are unable to get in touch with their Teacher of the Deaf (ToD) who normally supports the child at school. Typically, when this would happen in school the ToD would visit the child at school and would fix it within a short period of time, or if it happened outside of school the family would get an emergency appointment with audiology. Without the hearing aid the child is facing significant barriers to communicating with their family. Currently Sense is trying to find a solution, but for now the child is at home without a vital piece of communication technology.
Sense has significant concerns about the process of transitioning children and young people with complex needs and or MSI back into schools and colleges once they start to reopen, and this will be particularly acute for children and young people starting at new schools or colleges, for example moving from year 6 to 7, or from year 11 to college. Normally there would be considerable support for children moving from primary to secondary. They would usually be familiarising themselves with school layout, learning mobility routes etc. The Local Authority team and our specialist services team would be providing training to new school staff around sensory impairment, support and accessibility. This work normally takes a term, but now cannot happen at a pace that will meet the needs of the child of young person.
Many of the children and young people will need additional support to go back to school following an extended period at home in self-isolation with their families. This could be in the form of a phased return to school, or schools opening for children with complex needs first to support them to adjust before the wider school population returns. We are pleased that the SEND Guidance recognises the benefits of part time or phased returns and the priority needed for children and young people experiencing key education or life transitions. It is vital that the Department for Education works with families and professionals to ensure that children and young people with complex needs are able to access the specialist support they need to safely transition back to school or college.
One young person supported by Sense is in the middle of his transition year to college. This involves changing LA, the family had support at his current school, but the placement has stopped last minute. As a result, there has been a delay in sending funding and paperwork for the new provision at College. If he were in school, the transition support would have started. None of this is happening now because of the virus. The new college were waiting for authorisation to put provision in place, but are now unable to support. Sense are supporting with moving this forward, liaising with professionals, and following up with complaints to try and get the situation resolved for the return to school. However, our concern is that without the appropriate transitional support this could have a long term impact on the outcomes for the young person.
In the absence of school provision, respite and additional support from day centres or family groups, many children with complex disabilities and their families are finding self-isolation and social distancing very difficult.
A lot of families that Sense supports have been trying to help their children to understand that their school and favourite places are closed, some have taken them to gates/doors to help communicate the changes. Due to the immediate necessity of the measures put in place due to COVID-19 there was no time to support children to transition or adjust, although this was unavoidable, the impact has been considerable. We have been supporting families to problem solve how they can communicate the situation to their children.
Sense are supporting many families around strategies at home to support behaviour brought on by change in routine, lack of access usual activities/environment, loss of interaction with teachers, support workers, or family, and mental health.
A number of families have been in touch as their young people are struggling with the change in routine which is impacting on their mental health and wellbeing. The Sense Specialist Children and Young people team have been working families to develop support and alternative provision. In some cases, this required face to face interventions.
A young person has been struggling with the change in routine and the inability to partake in usual activities such as swimming. His frustrations have come out in self-injurious behaviour that the family are struggling to manage. Usually if this sort of behaviour were happening in the home our team would offer home visits and demonstrate some strategies and the family would have some respite with school and other social activities in the community. Sense managed to arrange for the usual intervenor social care support to resume in the home and at our specialist centre. Our specialist services have liaised with the Local Authority and evidenced the need for face to face support. A thorough risk assessment was completed to ensure maximal safety. It was a greater risk that he stayed at home. The ongoing challenge is having to risk assess what is worse for the child: risk of COVID or risk to family and himself if he is at home.
According to our Children & Young People’s Specialist Services, there is a considerable lack of information about self-isolating and especially long term planning. Many families haven’t received a letter to indicate that they are on the vulnerable list and should be shielding, including families who have children with tracheostomies or reduced lung function. Whilst we welcome that many of families have received this information after a second tranche by GP’s of ensuring all vulnerable people have access to the information they need, it is vital that information should be provided in a timely manner. The constantly changing information and communication environment is difficult for parent carers to manage whilst providing full time care and support to their children. Parent carers are feeling excluded from decision making about their child and the support they are going to receive. This is contributing to feelings of isolation and anxiety. It is vital that parent carers are consulted and involved in the decision making process, not just at the local level but also by Government in the development of policy.
Schools, Local Authorities and CCGs must work jointly to identify those families who may need support and additional information about how to keep themselves safe and healthy. Families should have access to a key Local Authority contact who can co-ordinate communications and signpost for ongoing concerns.
The ongoing absence of access to education and reduction of the vital low level SEND interventions could result in more complex health needs or behaviour that may challenge developing, resulting on additional pressure on the NHS as well as parent carers. Therefore, if it is necessary for a child to no longer have access to SEND provision at school, it is even more crucial that Local Authorities provide additional social care support at home.
Parent carers need additional at home social care solutions in the absence of SEND provision, respite and day centres. This is important for families caring for children and young people who have behaviour that may challenge. This uncertain period, with changes in routine and a lack of usual activities, means many young disabled people are distressed and anxious. There needs to be a whole family approach to providing at home support which recognises the physical and mental health and well-being of disabled children, parent carers, siblings and other family members. This could include remote solutions but also where necessary at home support with care workers assisting families with personal care, communication needs and positive behaviour support. Crucially, families need more information about how to stay safe caring for their loved ones in the event that parent carers are unwell.
Local Authorities and Government must support parents and carers to plan in case they are unwell and unable to look after their loved ones. At Sense we have been told about a case where a family has been informed by a Local Authority that a ‘best interests’ decision has already been taken without their consent and that the young person will be placed in a secure mental health ward in the event family are unwell or no longer able to provide care at home. This is an inappropriate care environment for the young person with complex disabilities and the family are now gravely concerned about the wellbeing of their loved one. Any contingency planning must take place now, with the consent and reflecting the wishes of disabled people and their families.
Sense is particularly concerned about the impact on siblings of the closure of schools. Siblings of disabled children are not automatically classed as vulnerable children and for that reason local authorities will not be required to undertake a risk assessment. In reality siblings are likely to be incredibly vulnerable during this time, with parents juggling full time caring responsibilities and unlikely to be able to dedicate enough time to adequately home school them. Some siblings may also take on caring responsibilities. It is vital that siblings of disabled children are automatically risk assessed by local authorities to ensure that they are able to receive the educational, health and particularly mental health support.
Sense has historic concerns about the efficiency and success of the SEND system. Many children Sense supports have struggled to access the provision they need, and many have missed out on education and had their physical and mental well-being affected as a result.
It is increasingly likely that government reviews intended to address the problems in the system, such as the SEND internal review, will be pushed further and further down the road due to the Department for Education and the Treasury capacities in the current public health emergency. This is complicated by the recent legislative changes which radically alter the hard won rights and entitlements of disabled children and their families. These changes must be closely monitored and as soon as is possible reversed so that the already complex and inefficient SEND system is not weakened further. Local Authorities, schools and CCGs must work jointly to keep a transparent record of any changes to EHCPs and SEND provision, with particular attention on those children and young people in the middle of assessments, reviews or transitions.
It is important that learning from the current public health emergency is included in the SEND internal review. This is why transparent monitoring is vital to keep accurate records and data which reflect any impact of legislative changes. However, we must not underestimate the legacy of the ongoing issues experienced by many disabled children and their families when endeavouring to access the right support. The continued delay in reviews, recommendations and a long term funding solution, will mean an even longer wait for access to the support children with MSI need to have the best start in life.