Category: NNPCF work

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Bills and legislations Parent Carer Forums

Down Syndrome Bill update April 2022

Article updated 02/05/22

What is the Down Syndrome Bill?

The Down Syndrome Bill is a private members bill sponsored by Dr Liam Fox MP and Baroness Hollins. The purpose of the Bill is to “Make provision about meeting the needs of persons with Down syndrome; and for connected purposes.”

The Bill stipulates:

”(1) The Secretary of State must give guidance to relevant authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions.

(2) Relevant authorities must have due regard to the guidance in the exercise of their relevant functions.

(3) Before giving the guidance the Secretary of State must consult such persons as the Secretary of State considers appropriate.

(4) The Secretary of State must publish the guidance in such manner as the Secretary of State considers appropriate.”

The Bill then stipulates what are relevant authorities; they include any public body that might provide services or support to people with Down Syndrome, except for welfare benefits.

Progress through Parliament

On 1 April 2022, the Bill passed the third reading in the House of Lords. As there were no amendments, the Bill is now in its final stages and will receive Royal Assent before the end of the current Parliamentary session, thereby becoming law – the Down Syndrome Act 2022.

The DS Bill is supported and championed in Parliament by 43 MPs and Lords who form the All-Party Parliamentary Group (APPG) on Down Syndrome. Their current five priority areas are:

• maternity care

• education

• employment

• social care

• health care/research

Next Steps

It is expected that the statutory guidance to relevant authorities will be laid before Parliament in Spring 2023.

The National Down Syndrome Policy Group (NDSPG) support people with Down syndrome to have a say in the formation of policy in matters that impact their lives. NDSPG supporting bodies include 39 national and local organisations including Mencap, Down Syndrome Education International, Positive About Down Syndrome (PADS).

The NDSPG is one of several organisations that will be involved with the open consultation.

The Department of Health and Social Care (DHSC) will facilitate the open consultation.

The consultation mandated by the Bill will inform the statutory guidance. This includes input by adults with Down Syndrome.

The Down Syndrome Association, who are committed to improving the quality of life for people who have Down syndrome, will be submitting their own response. You can find further information on their website:

https://www.downs-syndrome.org.uk/

info@downs-syndrome.org.uk

Details on how to get involved with the DHSC consultation will shared once published.

What does this mean for forums?

  • Forums should be aware of the Down Syndrome Bill and make their members aware of the proposed changes.
  • Forums may wish to respond to the consultation on statutory guidance (when published) or share their views with the NNPCF Consultation & Policy Lead to inform the NNPCF response.
  • Forums may wish to look in more detail at examples of good practice elsewhere and work with partners to develop a Down Syndrome pathway and improve local and practice and services.

Further information

The Down Syndrome Bill

The National Down Syndrome Policy Group

All Party Parliamentary Group – Down Syndrome

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Department for Education NNPCF work SEND Review

SEND review – engagement opportunities for parent carer forums

The NNPCF steering group has been working with a variety of stakeholders to offer parent carers and forums the opportunity to be briefed and engage in the SEND Green Paper. This post updates you on what we are planning and how you can get involved.

The SEND review has been a long time in the making. It was originally launched in the summer of 2019. Delayed by general elections, government reshuffles and Covid 19, it represents an opportunity to reset and further reform the SEND system following the 2014 Children and Families Act.

The latest information we have suggests that the resultant SEND Green Paper will be published before the end of March. Although, this is subject to last minute change, we are hopeful that the conference will provide a platform for Ministers and the Department for Education to share the contents of the Green Paper just after its publication.

This post outlines this and other engagement opportunities we are planning to ensure that Parent Carer Forums are briefed and our voice is heard as clearly as possible through the Green Paper consultation process.

7th March 2022 – Children and Families Minister Will Quince will be presenting a webinar that is jointly hosted by the NNPCF, Special Needs Jungle, Contact and the Family Fund. The Minister will share some information about the work of the review and will answer some questions set by parents. NNPCF Cochair, Tina Emery will be one of the joint facilitators of this event. Booking details for this event were shared on Tuesday 1st March. All 200 places have already been taken. If you have booked and are unable to attend, please let us know so we can offer your place to someone else. Note: because this is BEFORE the publication of the Green Paper, we do not believe Minister Quince will be in a position to share details of its content.

23rd March – Minister Will Quince is booked to appear at the NNPCF / Contact virtual conference. We are hopeful that the Green Paper will have been published by this time and so Minister Quince will be able to comment on the details. If so, this will be one of the very first engagement events after its publication.

24th March – we are in the process of planning a full-blown engagement session with the Department for Education at the joint NNPCF / Contact conference. We are hopeful that the SEND review team will be able to join the session and it will be an opportunity for parent carer forums to give some early feedback on the contents of the Green Paper. At this session NNPCF cochairs Mrunal Sisodia and Tina Emery will also share their initial thoughts and response – to what extent does the paper incorporate the things that PCFs asked for?

Please look out for the conference booking link that will be circulated shortly to book onto these events.

Note: please be aware that all these plans are subject to change. As you know the SEND review has already been delayed many times and it is possible there may be further changes that are beyond our control.

After the above events, there will be other engagement events planned by the Department for Education. The schedule has not yet been finalised or published but we will share this with you as soon as we have further details.

In addition, we are planning a large parental survey to ensure that as many families as possible have the opportunity to input into the Green Paper proposals. To maximise its reach and ensure that the key messages are amplified, we are planning to coproduce and distribute the survey with other parental representative groups including Special Needs Jungle, Let us Learn Too and the Disabled Children’s Partnership.

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Education NNPCF work SEND Review

SEND Review Update: NNPCF

macbook pro on brown wooden table
Photo by Andrew Neel on Pexels.com

NNPCF Co-Chairs continue to attend SEND Review Steering Group and represent views of parents and forums but the NNPCF is also heavily involved in the wider sector response to the review.

One example of this is our work with the Special Educational Consortium (SEC) of which the NNPCF is a member.

SEC is a group of organisations who protect and promote the rights of disabled children and children with special educational needs (SEND) and provide a unified voice for the sector. They work with the government, the Department for Education, members of Parliament and other organisations when there are proposals for changes in policy, legislation, regulations and guidance that may affect disabled children and children with SEN.

We believe it is really important that all parental and sector voices are heard by the Review Team and at the last SEC meeting, members were joined by Charles Lang from DfE who is leading the SEND Review. The following key areas were discussed:

  1. Keep it early: early action to identify and meet needs
  2. Keep children in school: focus on the quality of universal provision in settings, schools and colleges
  3. Keep children local: an integrated approach, locally delivered
  4. A recovery programme for all

SEC had compiled a list of 20 asks of the SEND review that the NNPCF have contributed to and which aligns with the messages that the NNPCF have given the SEND review. What we need from the SEND review: NNPCF co-chairs brief Children and Families Minister Will Quince – National Network of Parent Carer Forums C.I.C

We encourage parents to keep talking to their local forums and forums to keep feeding back to NNPCF top ensure that your views are represented in the SEND review. Please share your views with your regional NNPCF steering group member and you can also send your thoughts to consulation@nnpcf.org.uk.

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Department for Education DfE guidance Minister for children and families NNPCF work

Powers of the SEND tribunal to make non-binding recommendations extended

The government has confirmed that the single route redress national trial will end in August (it had been extended because of Covid 19). In line with the recommendations of the trial, the government has confirmed that the powers of the tribunal to make non-binding recommendations on health and social care will continue. Children and Families Minister Vicky Ford has written to members of the Single Route of Redress Steering Group to confirm this decision and thank them for their efforts. We attach a copy of the letter;

Minister-Ford-letter-to-SEND-Tribunal-Steering-GroupDownload

The NNPCF has worked extensively on this project as a member of the steering group and outside. We have consistently argued that the powers of the tribunal to make judgements on health and social care services was necessary and a positive step towards increased accountability and protecting the rights of children with SEND. We also maintain that the judgements on health and social care should be made binding.

You can find more on our work on this topic here NNPCF work to improve accountability in the SEND system – National Network of Parent Carer Forums C.I.C

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Contact for families with disabled children NNPCF work

NNPCF and Contact announced as strategic parent carer coproduction partners for CYP learning disability and autism team


In a joint bid, NNPCF and Contact have been awarded a three year contract to be the strategic partners for NHS England’s Children and Young People’s Learning Disability and Autism Team, focussing on parent carer coproduction.

This means that the NNPCF will be involved in key elements of the development, implementation and review of the NHS Long Term Plan in relation to children and young people with a learning disability or autism (LDA).

The contract covers areas such as:

  • The response to covid 19
  • Supporting regional and local parent carer forums to engage in the NHS Long Term Plan
  • Sharing information with parent carer forums about the long-term plan and providing feedback to the NHS LDA team on the lived experience of families
  • Attending key boards and decision making bodies.

We have already started this work. Find more:

This contract is limited to national work. We believe that the NHS should also fund regional and local PCFs. Decision making and monies around regional and local implementation are devolved to the NHS regions and we continue to have conversations with regional NHS leaders to secure funding for all PCF regions (currently only the South West is funded).

Find out more about what the NHS Long Term Plan says about learning disabilities and autism.

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NNPCF work Vaccination

NNPCF representations on the Covid 19 vaccination of children

The last few weeks have seen a lot of press and media comment on the subject of vaccination of children versus covid 19.

Advice to government on whether children should be vaccinated is being prepared by the Joint Committee on Vaccinations and Immunisations (JCVI). JCVI is an independent group that is not a part of the government and the NHS. Based on their advice, a government policy will be developed.

It is clear that Covid has little direct impact on children (see recent BBC article on UCL research Covid: Children’s extremely low risk confirmed by study – BBC News). This may suggest that they should not be vaccinated. In addition, there are ethical arguments about medicating someone that is for the benefit of someone else (i.e. the vaccination of children is primarily to protect more vulnerable older people from the spread of the virus) especially when they lack capacity to make that decision themselves (which is the case for children).

However, children are significantly indirectly impacted by the response to covid (e.g. needing to isolate). It is also clear that whilst the risk remains very small, some children are at increased risk from Covid such as those with severe neuro-disability and severe respiratory conditions. Many of these children will fall into the category of having SEND.

The NNPCF has been made the following representations on the subject of vaccinations:

1. If evidence suggests that vaccination of children is effective and safe, it should be made available to children who are at higher risk of severe illness

2. Any decision to give the vaccine must be coproduced with parent carers and children and young people. There should be no judgement or pressure to be vaccinated or not.

3. Reasonable adjustments should be made to enable children with SEND to access the vaccine where required.

For more on the impact of on children see the Royal College of Paediatrics and Child health website Message for paediatricians on children and young people and the COVID-19 vaccination programme | RCPCH

Also see the article in the Guardian by Professor Russell Viner who spoke at the joint NNPCF / Contact conference in December. Shall we vaccinate our children? We could start by asking them first | Russell Viner | The Guardian

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NHS England NNPCF work Parent Carer Forums

Autism Schools Project

The Autism schools Project is being rolled out across the country over 2021/22 period. This project was one of the Children and Young People Accelerator Projects run in North Cumbria and the North East and is now going out to the rest of the country.

The Infographic accompanying the project, which highlights how parent carer forums can be involved, can be viewed here.

NCNE-Autism-Schools-project-rolloutDownload

The full project report can be viewed here.

Autism-School-Programme-information-for-regions-Download
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NNPCF work Social Care

Josh MacAlister makes “The Case for Change” at joint NNPCF / Contact webinar

The independent review of children’s social care has published its case for change. You can find it here:

Home – The Independent Review of Children’s Social Care (independent-review.uk)

On Thursday 24th June at noon, Josh MacAlister, the independent chair of the review, will be joining an NNPCF and Contact webinar to talk about the case for change and what it means for children and young people with SEND.

You can sign up to the webinar here: Meeting Registration – Zoom

The NNPCF have been working with Josh and the review team to ensure that the issues most important to SEND families are included in the review.

Many of the issues we have raised with the review team are included for example:

· There is a recognition that families need support rather than “investigation”

· The inconsistency in classifying children with disabilities as Children in Need

· The lack of appropriate support for families with children with disabilities is noted

In addition, man y of the major themes that we have raised with the SEND review are also recognised in the report, for example:

· The need for a better definition of what early help and intervention (family support) is available

· The need for more multi-agency working

· The financial pressures on the children’s social care system

You can find out more about our work with the review team here: NNPCF input into children’s social care review – National Network of Parent Carer Forums C.I.C

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NHS England NNPCF work

Joint letter to the Secretary of State for Health and Social Care

Key Sector leaders have written a letter to the Secretary of State on the Health & Care Bill which outlines key concerns, asks for greater engagement with the sector and calls for the shortcomings in the bill to be addressed to ensure the needs of children and young people are met.

HPIG letter to Secretary of State for HealthDownload

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consultations NNPCF work SEND Review

NNPCF work to improve accountability in the SEND system

One of the four priority areas for the NNPCF this year is to improve the accountability across the SEND system – to ensure that those bodies with responsibilities to support children and young people with SEND actually deliver what they are required to (please see the presentation at our AGM in March for the other priorities Microsoft PowerPoint – AGM slides 20210315 (contact.org.uk))

We are actively working to improve this accountability across three separate projects:

The Single Route of Redress

For the last 3 years, a national trial has been running that allows the SEND tribunal to make non-binding judgements on health and social care services, if there is also a valid educational concern. The evaluation period for the trial has now ended and Ministers are due to make a decision about whether to mainstream the trial powers of the tribunal. The trial period itself ends on the 31 August 2021.

The NNPCF has been clear that we would like to see this trial made permanent and has been participating in meetings with the Department for Education and the Ministry of Justice. Although not possible at present, we would also like to see the powers of the tribunal extended to make binding recommendations on health and social care in the future.

You can see the quarterly updates from the single route of redress national trial here Newsletters – Mott MacDonald (sendpathfinder.co.uk)

Local area inspections

Ofsted and the Care Quality Commission have been looking at how the next round of local area inspections should be structured. It is clear that the focus will need to move from an implementation of the SEND reforms onto an assessment of how well local areas are meeting the needs of CYP with SEND and improving outcomes. As a part of this we would like to see the inspectorate focus on things such as how well do local education, health and care plan and deliver services together, how SEND money is spent in the system, early

intervention, inclusion in mainstream schools and coproduction with families and parent carer forums.

We are also pleased to see that the current round of local area inspection are due to resume. See the announcement and guidance from Ofsted. Ofsted: coronavirus (COVID-19) rolling update – GOV.UK (www.gov.uk)

The SEND review

We also believe that legislative and regulatory changes to the SEND system are required to improve accountability. We have shared these ideas with the SEND review team. These include:

· A consistent national definition of services that available to families with some minimum standards

· Time limits lined for delivery of services

· Guidance on who pays for what across the system

· More transparency on how money is spent

· Gather smarter statistics to show where services are not meeting standards

You can see more on the input we have put into the SEND review in our presentation to the joint NNPCF / Contact conference in March.