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Department for Education NNPCF work parent carer forum guidance Parent Carer Forums SEND Review

Ministerial changes and what’s next for the SEND Green Paper

The last 24 hours of political turmoil have seen changes in the ministerial team responsible for the SEND policy and legislation including the Green Paper. Nadhim Zahawi has been promoted to Chancellor of the Exchequer and Michelle Donelan has replaced him as Secretary of State for Education. Will Quince, Children and Families Minister has resigned his position. At time of writing we have no news of his replacement.

Since 2017, there have been seven Children and Families Ministers (soon to be eight). The NNPCF are well versed in meeting new Ministers and introducing them to the work of parent carer forums. Whilst Ministers change, the challenges faced by our children have deepened and regardless of who is in post, we will continue to represent the views of parent carer forums to the best of our ability and work with officials behind the scenes.

What does this mean for the SEND review and the work of the NNPCF?

At time of writing, the SEND Green Paper remains in place and reform of the SEND system remains government policy. The NNPCF are continuing to meet with Department for Education officials to progress the work of the Green Paper and we will carry this work on until plans formally change. We continue to engage with the continuing consultation process – for example, yesterday NNPCF Co-chair Mrunal Sisodia met with DfE officials to plan a series of “stress test” workshops to look at how the new proposed system will meet the needs of some of the children that have been let down by the current system and today, the NNPCF board are meeting with DfE officials to brainstorm what the new national standards might look like.

Webinar with Minister Quince Monday 11 July

Clearly, Will Quince will no longer be attending the webinar planned for Monday. However, we intend to proceed with the Webinar and are currently in discussion internally and externally (including with the DfE) on alternatives.

We know this time will be especially unsettling for our families but do rest assured we will continue to focus on our priorities and will keep you updated on any developments.

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Bills and legislations consultations parent carer forum guidance

Proposed changes to the Mental Capacity Act 2005 Code of Practice and implementation of the Liberty Protection Safeguards

Policy briefing for parent carer forums

The Government are consulting on the proposed changes to the Mental Capacity Act 2005 (MCA) Code of Practice, which includes guidance on the new Liberty Protection Safeguards (LPS) system. The consultation is also seeking views on the LiPS regulations, which will underpin the new system.

You can access the consultation here.

This is a joint consultation published by the Department of Health and Social Care (DHSC) and the Ministry of Justice (MoJ).

The LPS will apply to people over the age of 16, and the Department for Education (DfE) has been involved in the development of this new system.

What is Mental Capacity?

Mental capacity is the ability to make decisions.

This could be small decisions like what we eat or the clothes we wear, or could be much bigger decisions, for example where we live and who we live with.

The Mental Capacity Act (MCA) sets some important key principles. 

  • The starting point should be that a person must be assumed to have capacity unless it is established that they lack capacity.
  • A right to support in making decisions: “A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.” The right to make unwise decisions: “A person is not to be treated as unable to make a decision merely because he makes an unwise decision.”
  • Capacity is based on a single decision at a single time, so some people may have fluctuating capacity, meaning they can decide one day and not the next depending on their wellbeing. Therefore, this needs to be taken into consideration when assessing capacity and considering a time when someone is likely to be at their most able to make a decision.

Provision is made in the Children and Families Act to deal with this.

Under the Act, lacking mental capacity has the same meaning as in the Mental Capacity Act (MCA) 2005.

The Mental Capacity Act 2005 sets out what should happen when people are unable to make one or more decisions for themselves. It clarifies the roles that different people play in decision-making, including family carers.

Children under 16

For children under 16, the Mental Capacity Act does not apply.  Instead, a child needs to be assessed whether they have enough understanding to make up their own mind about the benefits and risks of treatment – this is sometimes termed ‘Gillick competence’ and means that the child has the competency to give consent and make decisions. The term ‘Gillick’ competence is usually used when considering medical treatments.

What is Deprivation of Liberty Safeguards (DoLS)?

The Deprivation of Liberty Safeguards (DoLS), referred to as ‘safeguards’ are part of the Mental Capacity Act (2005). They aim to protect people in care homes, hospitals, and the community from being inappropriately deprived of their liberty or that the appropriate process is followed if the person does not have capacity and is being deprived of their liberty. 

When considering a deprivation of liberty for a 16- or 17-year-old, where the young person lacks capacity to consent themselves to arrangements which meet the ‘acid test’ for deprivation of liberty (i.e., under continuous supervision and control and not free to leave), it is not sufficient for parents to consent to this arrangement. In such circumstances the Court of Protection will often need to approve such an arrangement.

It is recognised that in most situations, providers and families are working in the best interest of a young person. Often when a young person is deprived of their liberty, it is usually with the purpose to safeguard them from harm or harm to others. However, when considering any action, for example preventing a young person from leaving a home, thought should be given to what is the least restrictive option for the young person, whilst keeping them safe.

What are Liberty Protection Safeguards?

The Liberty Protection Safeguards were introduced in the Mental Capacity (Amendment) Act 2019 and will replace the Deprivation of Liberty Safeguards (DOLs) system. The UK government is now consulting on draft regulations which will underpin the new system.

It is envisaged that the new LPS will provide a more streamline system to manage any deprivation of liberty. The implementation of these new arrangements has been delayed and so far, there is no confirmed date when they will be introduced. Therefore, the present arrangements will remain in place for the near future.

When introduced the Liberty Protection Safeguards will provide protection for people aged 16 and above who are or who need to be deprived of their liberty to enable their care or treatment and lack the mental capacity to consent to their arrangements.

People who might have a Liberty Protection Safeguards authorisation include those with autism and learning disabilities who lack the relevant capacity.

What does this mean for forums?

  • Forums should make their members aware of the proposed changes.
  • Forums may wish to respond to the consultation or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
  • Forums should be aware of the how mental capacity is assessed and decision making supported in their local area for young people with complex needs.
  • Forums should consider how this may affect the education and wider outcomes children and young people with complex needs are achieving.

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Department for Education parent carer forum guidance

Statement on Department for Education about increased funding for parent carer forums

Dear parent carer forums

We hope that you and your families are keeping safe and that you’re navigating the latest challenges as best as you can.

We’re really pleased to be able to confirm that the DfE has this afternoon announced that they are continuing to fund SEND contracts next year.

You will be delighted to know that in recognition of the amazing work that forums do, especially throughout the pandemic, that forums’ funding has been increased by £2,500, to £17,500. We hope that forums will be reassured that funding is to continue for another year, and that the DfE sees the value and impact of the work of forums locally and regionally, and nationally, via the NNPCF.

Helen Scott at the DfE said ‘We are pleased to announce that we will re-awarding current contracts and grants which enable schools, colleges, families and local authorities, to support thousands of children with SEND. This includes providing up to £17,500 for each Parent Carer Forum – an increase of £2,500 compared to 2020-21 – to strengthen the participation of parents in the SEND system’

Tina Emery and Mrunal Sisodia, Co-Chairs of the NNPCF stated that ‘The National Network of Parent Carer Forums are really pleased that there is an extension to the strategic participation contract and we look forward to working with all parties within the consortium over the coming year. We are delighted that the DfE has recognised the difference that forums make, which is reflected in the £2,500 increase in the grant funding’.

This is a huge testament to the work that you all do to make a difference and to work with your local area partners to ensure the best service possible for your children and young people. We’re really proud to see how forums have developed over the years, and that they have become such strong and respected organisations.

We both look forward to continuing to work with all forums, and our other strategic participation consortium partners CDC and KIDS over the coming year.

With very best wishes,

Contact and the NNPCF

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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.

Testing

  • 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.

Vaccinations

  • 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

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.