National Network of Parent Carer Forums C.I.C
We are delighted to share that our former Co-Chair, Maureen Morris, has been awarded an OBE for services to parent carers of children and young people with SEND in the New Year Honours List 2023.
You can see the list on the government’s website: https://www.gov.uk/government/publications/new-year-honours-list-2023-cabinet-office
The National Autism Peer Education Programme will offer families and carers of autistic people high-quality and easily accessible autism education, training, and support, via regional hubs across England, alongside a dedicated website.
The programme, which has been commissioned by Health Education England, will be delivered by the National Autistic Society, alongside the NNPCF and seven other charities: Autistica, Ambitious about Autism, the Autism Education Trust, the Autism Alliance, Contact, Great Minds Together and the British Institute of Learning Disabilities.
We are seeking the input of families, carers and autistic people to help us develop a programme of education and coaching specifically for families, carers and personal assistants.
This support will include autism education, training, and coaching via regional hubs and via their peer educators (autistic people and their families who are trained to train and coach other families) across England, alongside a dedicated website.
Through taking part in this survey, you will help ensure the family/carer and autistic voice is at the centre of the programme and that it meets their needs.
Please be aware the regional hubs are not yet established and so opportunities for becoming a Peer Educator or for accessing the services will come later and be informed by this survey and other means of co-production.
These opportunities will be publicised via the regional hubs from Spring 2023.
https://eu.surveymonkey.com/r/PEPNNPCF
Thank you for taking part in this survey, which closes on 19 December.
Ofsted and the Care Quality Commission have released the new framework and handbook for local area inspections.
Area SEND: framework and handbook – GOV.UK (www.gov.uk)
The NNPCF have been closely engaged in the development of the new framework over the last 18 months ranging from feeding back on parent carer perspectives on the first round of inspections to local forums engaging in the pilot inspections under the new framework run by Ofsted and the CQC in recent months.
There are significant changes in the new framework, most notably:
Four different types of inspection dependent upon the status of the local area:
There will be three categories of rating given to local areas
Many of the themes that the NNPCF made representations on have been reflected in the new framework including a greater focus on outcomes, joint working, early help and coproduction with families. There are strong ties across things we asked for in the SEND and Alternative Provision Green Paper through the production of a joined up strategic plan.
We are particularly pleased that the NNPCF has been successful in ensuring that the new framework recognises the importance of parent carer forums in the inspection process. It specifies several areas in which parent carer forums are involved:
We are keen to seek early feedback from those areas that have taken part in the pilot inspections under this new framework.
If your area has been a pilot area, please complete this short survey. https://forms.office.com/e/W5nvbDc1Vd
We will use this information to feed back to the inspectors about how they can improve the implementation of the new framework and we will share the findings with our member forums to brief them on what they can expect.
You can find some of our work on this subject here
25 November 2022
The NNPCF steering group and management team recently met with Katherine Cowell, the SEND lead from the DfE regions group.
The regions group was set up recently and supersedes the office of the regional school’s commissioner. The regional directors work locally across children’s social care, SEND, schools and area-based programmes. The new department brings together the department’s existing regional functions across social care, SEND, regional schools commissioners and the Educations and Skills Funding Agency. The objective being that the DfE is able to take a more joined up regional approach across these areas.
You can find more information here: Regional Department for Education (DfE) Directors – GOV.UK (www.gov.uk)
The teams have responsibilities for oversight of academies, trusts and significant changes to the set up of schools (for example adding a resource base). For SEND they engage in inspection responses, what works in SEN programme as well as DBVS and sector led improvement.
The NNPCF representatives raised many of the issues that parent carer forums report with the treatment of children with SEND by some academies and academy trusts including exclusions, part time timetables, behaviour and attendance policies that do not make reasonable adjustments including citing specific examples.
Katherine stated that, at present, the regional directors have limited powers to intervene in schools and in very specific circumstances (for example if the DfE receives complaints that have already been raised through the individual school / trust’s complaints policy or if there are concerns about governance).
We agreed that the regional directors would build contacts with each of the NNPCF regions so that forums can share their experiences and start to build a closer working relationship.
Look out for more information for engagement opportunities in your regions.
We would like to welcome Jilly Russell, from Cumbria PCF (SENDAC) to the North East representative role.
Of her appointment Jilly said ”I’m really excited and pleased to be joining the fantastic team already at NNPCF and glad to represent Cumbria and the North East as their steering group member.
We all got involved for the same reason and it is great to share that passion with a group of such lovely people! I’m excited to bring some fresh and exciting new ideas to the plate and hopefully my experiences over the past few years with my own two daughters will really support me in this new position.
I can’t wait to meet as many of you all as possible, whether it be in person or virtually and am always happy to speak to anyone who wants to reach out, my email inbox is always open!”
We would like to thank Jo Gilliland for all her hard work and commitment to the North East Regional Representative role. We all wish her the best of luck in her new role with NHSE in the North East.
Jo said ”I have enjoyed my time as the NNPCF SG Member representing the North East & Cumbria region. We have made great strides in developing the region and have a great regional team, I wish Jilly the best of luck when she comes into role representing a fantastic group of 13 parent carer forums.
I will be working across the NENC ICS in my new position and look forward to continuing to work in co-production with the PCF network.”
Jilly is currently shadowing Jo and will be in post fully in January.
The NNPCF know that the cost of living crisis is causing worry and stress for all families especially those with disabled children.
We bring the genuine issues that families are experiencing to every meeting we attend to ensure these at issues are discussed at all levels.
Below are some websites that may be able to offer assistance and advice during this winter.
General
Help for Household’s -This is the governments website with resources on how to get support with energy bills, household costs, childcare costs, and what discounts and offers are available.
Warm Home Discount Scheme – This may offer some people on benefits assistance or with low incomes towards electrical bills.
Getting help from your supplier for customer in debt – Scope have shared some helpful recourses to support with debt repayment schemes.
Help paying bills using your benefits – There is more information on the government’s website to advise about paying debts for energy bills out of benefits payments.
Charitable Trusts
Some energy companies have set up Charitable Trusts which customers can apply to for help if they are finding it difficult to meet energy costs or have arrears.
If your energy supplier doesn’t have a trust you can apply to
British Gas Energy Trust for help, as their charitable scheme isn’t just for British Gas customers.
Most charities will expect that customers apply to a debt/money advice organisation for help before going to them.
Families can find a debt advisor here.
There may be other charities who could assist with energy costs, by providing grants, which is money which doesn’t need to be
paid back.
You can use Turn2Us to search for grants and schemes.
Benefits check
Have you had a benefit check lately? It’s recommended that families get a benefits check from their local benefits advice service to check whether they are receiving all of the financial support that they are entitled to, as an increase in
income may help the family to meet ongoing costs.
They can find your local benefits advisor here .
Energy efficient upgrades
You may be entitled to energy efficiency support, which may help towards energy efficient upgrades to your home.
The charity Scope offer disabled people and their family’s advice regarding energy support. Disability Energy Support
Local Energy Advice Partnership LEAP
LEAP is a free service that is helping people keep warm and reduce their energy bills without costing any money
Contact
Charity for families with disabled children has lots of advice and help on their website from help with household bills to their Listening Ear service as well as cost of living support and advice
Citizens Advice
There is lots of useful information on their website your energy supply – Citizens Advice as well as their consumer specialist helpline
Oxygen
If your child has an oxygen concentrator, you can get a rebate for the electricity the concentrator uses from the company that supplies the concentrator. Contact them directly for advice.
Our NNPCF Cochairs meet with new Children and Families Minister
10 November 2022
On Monday, NNPCF cochairs Tina and Mrunal met with the newly appointed Undersecretary of State for Children, Families and Wellbeing, Clare Coutinho.
This meeting took place before Ministerial portfolios were officially announced – an indication of the importance of the NNPCF in the work being done by the Department for Education.
The Minister stated that she was very passionate about SEND and that the SEND agenda, along with the Independent Review into Children’s Social Care would be her biggest priority. At this early stage, she was unable to provide a detailed update on the immediate next steps for the SEND and AP Green Paper and the Schools Bill, she promised to keep the NNPCF informed and understood the interest in these items.
This was a short, introductory meeting and the Minister promised to continue to work with the NNPCF and parent carer forums. Tina and Mrunal invited the Minister to attend the national conference in Bristol on 28 February and to meet with the NNPCF board. We will keep you informed of further contact.
You can read more about Clare Coutinho, the new Parliamentary Under Secretary of State Minister for Children, Families and Wellbeing on the government website.
Our work with National Health Service England (NHSE) to develop health services.
Last year, the NNPCF was appointed the strategic partner for the Learning Disability and Autism workstream of the Children and Young People’s Long Term Plan.
In this capacity, we have been working alongside our NNPCF regions and local forums to develop services for children and young people (CYP) with learning disabilities and autism (LDA). We wanted to take this opportunity to share our work on two important areas – Autism in Schools and Keyworking.
The foundations of the AiS programme were based on supporting families and schools in innovative ways.
The aim was to
This involved bringing together health and education expertise to take steps to support children who were finding school a challenge due to their disability and ultimately to reduce inappropriate educational exclusions and hospital admissions.
After a successful pilot in the North East and Cumbria, this project is in the process of being rolled out across England.
To date there are 15 projects, covering 210 schools, these projects are about to embark upon the second year of delivery and take on more schools (minimum of 97 at the point of writing). All projects are implementing the 3 key elements of building relationships, increasing knowledge and hearing the young person’s voice.
The offer of the project differs from region to region, however there are 9 projects who are working with AET (Autism Education Trust)*, or using the AET resources, and 7 of the projects have made links with the mental health support teams in their locality. You can find out more about projects local to you from your regional NNPCF representative.
The pilot in the North East & North Cumbria was delivered in two phases, evaluations for these are below:
Parents were telling us that there were too many missed opportunities with this in mind the ethos behind the project was to bring together parent carers & schools, by implementing ‘mini forums’ within schools, providing support, signposting, facilitating workshops to meet parent carer needs within the setting and ultimately creating a network of peer support for parents with children within the school setting.
Alongside this, a series of workshops were delivered to school staff and the parent carer forum representatives who were supporting the mini forums element, at the same time looking at potential reasonable adjustments that could be made which would benefit CYP in educational settings. There was also an ‘all about me’ element to the training, so that school leads could train the trainer and deliver the workshop to students.
The NHS Long Term Plan includes a commitment that ‘by 2023/24 children and young people with a learning disability and/or who are autistic with the most complex needs will have a designated keyworker, implementing the recommendation made by Dame Christine Lenehan in ‘These are our children’.
Initially, keyworker support will be provided to children and young people with a learning disability and/or who are autistic who are inpatients in, or at risk of being admitted to, a mental health hospital. Keyworker support will then be extended to the most vulnerable children with a learning disability and/or who are autistic, including people who face multiple vulnerabilities such as looked after and adopted children, and children and young people in transition between services.
The framework (which was co-produced with parent carers and children and young people) that underpins the service is that children, young people and their families should:
In their role as strategic partner to NHSE, the NNPCF sit on the national steering group, the evaluation group and the workforce development group to ensure that representation is made on behalf of the parent carers who feed into us via regions and localities. Though the workforce development group we have ensured parents voice has helped shape the design of the mandatory training. This has been informed both by those with lived experience and feedback from our various network meetings, including the PCF Community of Practice.
Alongside this, parent carer forums are involved in their regional projects. The first two waves of the project (initial pilot and early adopters) have already been rolled out. We are currently (2022/23) in wave three of the projects, which brings keyworking to all remaining localities in England. Because of this phased approach, projects are in different stages of delivery.
NNPCF representatives and regional forum members have regularly attended the national Community of Practices (CoP) for each of the stages. We have taken the opportunity to deliver presentations on partnership/coproduction with forums at the various CoPs. We have ensured the parent perspectives are shared in the CoP and some regions have co presented on their project with their regional partners.
NNPCF have also been hosting a CoPs for parent carer forums to attend, share good practice and learn from others who at differing stages of project delivery. These CoPs offer an opportunity for forums to share a more focussed discussion, around keyworking from a parental perspective, than can be achieved in the CoPs with wider partners.
Joining links are shared on NNPCF social media and can be sent by your NNPCF steering group member.
*AET are a not-for-profit organisation supported by the Department for Education
Communication Access UK is an initiative developed by the Royal College of Speech and Language Therapists in partnership with charities and organisations that share a vision to improve the lives of people with communication difficulties. The NNPCF have been part of the steering group to create and develop the Communications Access Symbol from the beginning. It is a new disability access symbol underpinned by a completely free training package and standards. The NNPCF is currently working towards accreditation of the symbol, and you can join us by registering your forum, and sharing with your Local Authorities and health services. You can complete the training either as an individual or as an organisation. Find out more about the symbol here: https://communication-access.co.uk/about/
The training consists of 4 short e-modules that can be completed in your own time and is free to do. Once completed you will receive a certificate that will be valid for one year.
To hear why the symbol is important to people with communication difficulties please watch this video: https://www.youtube.com/watch?v=kD5_p_YZ1PY&t=1s
We’re proud to sign a new open letter to the Government on the specialist workforce 📬
We’ve signed the letter alongside over 110 other charities, royal colleges, professional bodies, professional associations, trade unions, parents and carers and others who want the very best for children and young people, including those with special educational needs and disabilities (SEND).
A wide range of specialist professionals play a huge role in the development of many young people – including by providing direct support, identifying needs early, and supporting teachers to develop their knowledge and skills.
But while the need for specialists is increasing, insufficient numbers are being trained to meet demand. Many are failing to be retained, and many are leaving the public sector altogether.
This must change.
We are calling on the Government to use their response to the SEND Review to address gaps in the specialist workforce and ensure there will be sufficient specialist professionals to help children – now and in the future.
#SENDInTheSpecialists
You will all have noticed the political instability over the last few months and weeks. Many parent carer forums and others in the SEND system have been asking what this means for SEND and how they should be responding.
Ahead of each financial year, the NNPCF outlines its strategy which includes a clear set of priorities for the coming year. You can see our presentation on this from our annual conference in March here NNPCF AGM – A review of the last year and coproducing our priorities for the coming year – YouTube
We outlined five priorities for the year. These included the SEND Green Paper, the Schools Bill and the NHS Long Term Plan. It is clear that the current political turmoil may impact these.
We do not yet know what will happen to some of our priorities
At time of writing, the legislative programme of “in flight” bills (including the Schools’ Bill) has been paused for review by the new government. We have specifically asked the Department for Education what this means for the Schools’ Bill and at time of writing they are unable to share which pieces of legislation will proceed in the current session of parliament.
Similarly, it is impossible to say whether the legislation required to implement the SEND Green Paper will be part of next session of parliament – no-one (arguably including the current Prime Minister) is in a position to say with any certainty what will be a part of the first Kings Speech (see note below). However, we know that the DfE continues to work on the response to the SEND Green Paper as we outlined in our article earlier this month. Department for Education update – National Network of Parent Carer Forums C.I.C (nnpcf.org.uk)
Similarly, you will have noted the financial turmoil recently following the mini budget at the end of September. The government and new Chancellor are still working on what the changes announced will mean for public spending. We cannot rule out that there may be cuts in services and programmes associated with SEND. This includes parts of the NHS Long Term Plan.
A shift in our strategic focus
This has led to giving greater focus to some of our work at a national level. Namely:
What can parent carer forums do?
It is clear that we cannot depend on major national initiatives to “rescue” the SEND system. Even if there were clarity over future plans, they would take several years to have an impact whilst many SEND families are in crisis now.
This makes the local work of parent carer forums even more important. Forums need to continue to represent the lived experiences of local families and work with their local areas to coproduce better services and more intelligent commissioning. This includes being involved in local implementation of ongoing programmes from NHSE (e.g. keyworking and autism in schools) and the DfE (e.g. Delivering Better Value in SEND and Safety Valve). Please look out for our updates on these programmes over the next week or so.
Regardless of the political turmoil, we continue to have very strong engagement with officials in government and from the NHS and will continue to work with them to progress the SEND agenda and represent the lived experiences of families of children with SEND.
Note: Each “parliament” is broken into “sessions”. Typically, there are 3 or 4 sessions in each parliament. The legislative programme for each session of parliament is announced in the monarch’s speech – until recently this was the Queen’s speech, but it will now be the King’s Speech. A parliament is marked by a general election and the current parliament started with the election of Boris Johnson as Prime Minister in December 2019. A change of “government” (e.g. a change of PM from Boris Johnson to Liz Truss) does not mean a new “parliament”.