parent carer forum guidance

Guidance for Parent Carer Forums on January national lockdown

At the start of January, the NNPCF published a list of risks and potential issues for children and young people with SEND at the start of a new national lockdown, in particular, one in which schools were closed.

Over the last 3 weeks we have been gathering intelligence from parent carer forums and many of the concerns we had highlighted have sadly materialised.

The main themes are ones of confusion around guidance and what is expected – many local areas, schools and health and social care providers are adopting local practises that are contrary to national guidance and law. There are many drivers for this including guidance from national government being issued late (and often after local practices were implanted), capacity issues, confusion around guidance and in some cases ignorance.

Below, we have updated the list published on the 4th January (in green) to update with the concerns that have been raised to us in the last three weeks.

The ability of the government to influence some of this practise at a local and school based level appears stymied at this time. In this situation local parent carer forums play an increasingly important role in highlighting these issues (and good practise where it exists) and working with local systems to address them. The NNPCF will continue to bring these issues to the attention of national government and NHS leaders including the Ofsted and CQC inspectorates and SEND tribunal leads.

Partial or full school closures

  • School places must be made available to vulnerable children and young people including those with EHCPs. During the first round of national school closures, many families reported that they were not being offered school places based on school focussed risk assessments. The DfE and local areas must ensure that all vulnerable children who want / need a school place should be offered one.

We are hearing that more vulnerable children and children of key workers are being offered places that in the first lockdown and more are taking those places up. However, we continue to hear examples of families being discouraged to take up places. Some local authorities have sent letters out to parents urging them to keep their children at home with no differentiation for vulnerable children who they should be “encouraging” to attend school as per guidance issued.

Forums tell us that many special schools are experiencing capacity constraints. Some have adopted good a good coproduction based approach in these circumstances, working with families to understand what provision they need and how this can be supplied. Others have taken unilateral decisions based on prioritisation criteria that have been implemented without consultation.

Where children with EHCPs are not offered a school place, or offered a part-time place, we would like to see this recorded using a separate code in registers and formal follow up by schools and local authorities to assess what alternative provision is necessary.

  • Conversely, we do not support mandatory attendance at school for vulnerable children. This decision must be coproduced with families. The particular needs and circumstances of families must be taken into account in making these decisions.
  • There needs to be an increased focus on children and young people on SEN support. Throughout this period, there has been a great deal of attention on CYP with EHCPs, but little focus and provision for those on SEN support who have often had little or no additional support. The new definition of “vulnerable” has the flexibility to include pupils on SEN support – parent carer forums should ensure this is implemented where appropriate

There have been some examples of mainstream schools seeking to broaden the attendance of children on SEN support. However, this point has not been well understood and typically schools are not implementing this.

  • We must ensure that remote education provided for CYP with SEN is differentiated and that the appropriate support is provided. Schools should work with families to ensure that innovative solutions can be put in place for children who require specialist or 1:1 support. This should also include access to any specialist materials and any necessary IT equipment.

Many families are reporting that the quality of remote education is better than in the first lockdown – teachers are in more regular contact and more differentiated work is being provided. However, this is very inconsistent across different areas, schools and even classes. Moreover, remote education of CYP with SEND remains a real challenge for many absent direct specialist or 1:1 support and access to specialist materials. In particular we are hearing of children with dyslexia are struggling with the huge quantities of text they are being asked to absorb.

We have heard examples of some schools telling families that remote learning is their main offer and those physically attending school will only receive “childcare”. This is clearly a problem and discriminatory for vulnerable children including those with SEND who need to attend school.

  • We must ensure that any system that replaces exams this year does not further disadvantage children and young people with SEND. The impact of factors such as anxiety, lost learning, missed therapy sessions and illness must be taken into account when assessing learners this year.

NNPCF have engaged with the DfE and Ofqual teams looking at assessments in 2021. You can find our update here: NNPCF input into assessments consultation – National Network of Parent Carer Forums C.I.C

  • We do not support the return of “reasonable endeavours” powers under the Coronavirus Act. If it is impossible schools and other services to deliver all the services in an EHCP there must be an open an honest conversation with families to coproduce what services are possible to deliver and what alternatives can be put in place.

Some local areas and schools have published information that the reasonable endeavours powers remain in force. This is completely unacceptable and we have escalated this to the DfE.

Social Care and Health services

  • If schools are closed for any extended period of time, we know that the need for social care services will be increased. In particular, local areas need to work to ensure that respite services continue to be available for families – they may also want to look at increased respite care provision if schools remain closed for an extended period. The creative and flexible use of personal budgets has been successful in some areas and should be enabled and encouraged.

Access to respite care remains a concern. With many SEND children out of school (whether through choice or not being offered a place) more families that were already tired are further stretched. Some providers are turning to online services which whilst it provides some diversion and variety for families, does not provide respite as children still need to be supervised.

Worryingly, we have heard of examples of respite provision telling families that have been isolating that they will lose their place because they have not been using it, even if the child concerned is considered clinically extremely vulnerable. We have also seen examples of families having unspent personal budgets being clawed back – we would like to see flexibility and creativity in how these funds can be used.

  • Clarity and flexibility on support bubbles for families with children with SEND. Because of the increased amount of support that families with SEND require, it is essential that there is some flexibility and discretion around support bubbles for them. This may be additional family members or carers being enabled to provide support within a bubble.
  • Health services should continue to be available to families through this period and the health services out children rely upon should not be redeployed. Where appropriate, services and consultations should be delivered remotely – many families reported satisfaction with remote occupational, speech and language and physio therapy services.

The guidance issued by the NHS that SEND health services should not be withdrawn has been helpful. However, we continue to hear of long waits for therapies, eye appointments, paediatricians appointments as demand grows and backlogs from the first covid wave remain. Some families have expressed concerns that they have not physically seen a paediatrician for over 12 months and are understandably concerned about the risks this raises when updating prescriptions for vital medications.

There continue to be some examples of CCGs and health trusts limiting access for therapy staff to certain sites or some settings not having clear visitor policies. This is hindering access to some essential services. We also have examples of health services being relocated to inappropriate or inaccessible locations.

  • Mental health support needs to be stepped up. The emotional impact on children of missing school is well recognised. Many CAMHS services have reported an increase in activity and acuity following the first round of school closures. We would like CAMHS services to be prioritised and resourced appropriately.

We continue to hear of increased concerns from SEND families around anxiety, behaviour and mental health and concerns about the capacity of services to respond.


  • The messages that testing is not mandatory to attend school needs to be reinforced. We have heard of some isolated cases where a different impression has been given. There are many reasons why a family may not want their child to be tested and these must be understood and respected.

We have heard of some isolated cases where families are being told that a covid test is required as a part of the risk assessment process or a prerequisite to returning to school.

  • Reasonable adjustments must be made to enable children to undergo testing where necessary. These may include performing swabbing at home in familiar surroundings and swabbing performed by a parent or other trusted adult. Parents should be trained and enabled to support testing where necessary. There will need to be a clear plan about how testing will be carried out when children are not physically in school.

There is confusion and very varied practise around the conduct of testing. Some schools and local areas are supporting trusted adults to be present and assist with testing others are not. We have not heard of cases of testing at home being allowed.


  • We would like to see children with SEND given a higher priority for vaccinations than other children. We understand that children (even those with underlying health conditions) are rarely ill as a result of contracting the virus but vulnerable children are often disproportionately impacted by the response to covid (e.g. lockdown) and so protecting them and enabling them to continue to access services must be a priority.
  • We also believe that teachers of vulnerable children and other staff that vulnerable children rely upon (e.g. special schools teachers) should be prioritised for vaccination.

Different local areas are taking different approaches to the priority for vaccinations for people involved in SEND including teachers, TAs, parent-carers and other care providers. We would like clarity that these groups should be given priority and in which wave they should be vaccinated.

Also, clearer messaging is needed from the NHS about whether the vaccine is authorised for use on children and whether it is safe for children. There is confusion and anxiety from parents about this.


Coproduction is more important than ever (as supported by the recent Ofsted and CQC report following local area visits during the pandemic). National and local government, school leaders and staff must continue to work strategically with parent carer forums to ensure services are delivered in the most effective way. Moreover, schools, teachers, NHS and social workers must coproduce with individual parent carers and young people to ensure that services are delivered in way that is effective for each individual family.

Please find a pdf version of this page below.

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