SENDIASS Activity (policy and process)

‘The IASS works with local partners, including local parent and young people forums to inform and influence policy and practice in the local area.’

(2.3 national Minimum Standards)

In relation to the strategic function above, the service has worked with and provided narrative and suggestions to the local authority and partners around policy and practice.

A summary of the key service activity around informing and influencing policy and practice is below:

Ongoing

Input to Suffolk SEND workstreams

The service is regularly invited to input to the work of partners to improve SEND services.

Previous examples include: making suggestions for the post-16 transitions guide, suggesting changes to draft of the Local Offer EHC needs assessment prompt sheet, reviewing drafts of Easy Read explaining the Key Working function and reviewing Liquid Logic (the EHCP portal) from the family perspective.

Due to reduced capacity, availability (to review and contribute) is currently limited.

Sharing intelligence

Monthly data and trends published on our website. An annual report is provided to our funders for the period September to August. These data include categories and themes of enquiries. You can find this information on our Facts, figures and feedback page.

Activity by month (most recent first)

July 2024

NDD Referral information online – Waveney

Suggestion to local authority/health to include some information explaining the referral process for Autism/ADHD on the Local Offer or Newberry clinic pages: The Newberry Child Development Centre .(jpaget.nhs.uk) (as these currently explain what to expect at an appointment and with assessment, but not how to go about a referral).

June 2024

Graduated response resource

Request from the local authority to review draft video content to explain their ‘graduated response’ (based on the graduated approach for early education settings, schools and colleges – as set out in the 2015 SEND Code of Practice).

SENDIASS feedback provided:

• The ‘assess, plan, do review’ process applies to early years settings and further education colleges (including involving specialists).
• As the resource talks about what’s available in schools – it could help to make it clear that this content relates to the graduated approach in schools (and AP) only.
• We felt generally that it talked more to professionals, and, in places, the framing could be changed so that it reads from the family perspective.
• Consider subtle change to framing that schools have access to (rather than what the LA can provide).
• Mention EHCNA – the parent/carer (or the YP 16+) has the right to request an EHCNA at any time, regardless of where they might be in the graduated cycle.
• Provided a draft of a possible alternative version for the local authority to consider.

Training Providers – process when there is an EHC plan

Following a number of enquiries, facilitated some discussion between Training Providers and the local authority (around the process of consulting/naming a setting in an EHC plan).

Proposed the idea to develop a resource/content for the Local Offer which explains the process.

May 2024

Transitions guide – new version

Feedback to the local authority included:

• Changing ‘should’ to ‘must’ (planning for the future in an annual review).
• Including an explanation that supported internships are unpaid programmes 6 months+.
• That a package of provision across 5 days might be appropriate to meet the young person’s needs.
• Include information to encourage a young person to disclose any disability to explore conversations about adjustments ahead of starting Uni.
• Include information about vocational profiles.
• School/college duty regarding students with autism and right to community care assessments.
• Transport – duties around students who are NEET or vulnerable to becoming so and for post-19.

EHC needs assessments/processes

Offered detailed feedback to the local authority regarding their proposed online modules aiming to provide multi-agency practitioners with an introduction to EHC needs assessments and support for writing quality advice for EHC processes. 

Included suggestions for increasing clarity regarding the law, specification and the ‘golden thread’ and re-ordering information to build understanding.

Draft information for multi-agency practitioners around annual reviews of EHC plans

Offered feedback to the local authority regarding their draft information for multi-agency practitioners around annual reviews of EHC plans. 

Included suggestions for increased clarity around Personal Budgets.

Preparing for Adulthood draft forms for families

Points raised included concerns that the form may seem to put the onus on young people (rather than on school/ college) to think about what help they will need and where from. 

Also asked for more clarity about how young people could seek support to access careers advice, and how the document could be embedded into ongoing SEN support, to ensure the continuous review of impact and progress.

SEND Improvement Board

• Clarity around the refresher training for local authority staff. Reminded that SENDIASS can support with building knowledge/offering training around EHCPs and working with parents.
• Requested SENDIASS linking with new co-production lead.
• Complaints dashboard – suggested including data about mediations/Tribunals, and trends from the parent carer forum and SENDIASS.
• Data – suggested to aim for the statutory timescales in plans.

Supervised and Supported Family Time

Reviewed the parent guide to supervised and supported family time, suggested some changes to the content and design to improve accessibility.

April 2024

SEND Strategy – What is it like to be a CYP?

SENDIASS were asked to input and shared:

• It is important that the voices of children and young people with additional needs are central to discussions about support.
• Many will need help to get their views across (in meetings and with any forms).
• Just half of the children and young people completing the SENDIASS survey said they felt they could tell school or college staff what they needed help with.
• Information about EHC plans was low priority for the young people completing our survey.  What came through was that there was little understanding of EHC plans and the link with how it helps them with what they want to achieve in the future (what is important to them).
• Since our survey, we’ve spent some time talking to some amazing groups of young people in settings (including specialist).
• We have been surprised to learn that young people in Suffolk with an EHC plan are quite often unaware that they have one. They shared that, though they sometime go to meetings, they did not understand the purpose and process, and they didn’t always feel enabled to play an active role.
• We included many direct quotes from young people about their difficulties sharing views in school, gaps in understanding the purpose of an EHC plan, and the difficulties they have taking part in EHCP annual reviews.

March 2024

Draft SEND Strategy – our suggestions for priority actions included:

• Transparent criteria/thresholds for services.
• Posters/printed resources for settings/libraries/surgeries (to reach families who are not accessing information online)
• Linking with the Suffolk All-Age Autism Strategy.
• Using knowledge and sharing best practice to help identify and support care needs for disabled children (who do not met the threshold for direct provision from DCYP)
• Training around key SEND duties and responsibilities.
• Whole school advice and strategies/training around sensory/environmental sensitivities.
• Training for clinical settings about adjustments (to help young people be independent and to access health appointments on their own).
• Strengthening the ‘consultation’ part of the EHC process, to work to minimise appeals (consistency/confidence around decision-making).
• Ensure decision-makers attend mediation.
• High % of EHCNA ‘refusal to assess’ decisions overturned in mediation. (track data from ACT to inform and improve).
• Create information and content on topics important to families which help them understand and participate in decisions (SENDIASS working on this too).
• That a member of our Advisory Group recently highlighted the quality of SENDIASS data. Is it used/does it inform? How could it be improved for partners?

Annual review digitised template (February and April)

Reviewed and input to the LA’s draft template, including involving the child/young person and supporting them to take part.

To include the consideration of a virtual AR if easier for the YP to take part.

To explain in the report the legal conditions for ceasing an EHC plan so that the host completing the report understands when it might be appropriate to recommend this.

Suggested including our Annual review of your EHC plan easy read (opens PDF) and our Person Centred Reviews (opens PDF) resources.

February 2024

SEND Accountability Board (focus around post-inspection next steps)

Highlighted the importance of improving communication with families as a key theme across the identified areas of action.

Invited LA to consider any information/training gaps that SENDIASS could support.

Shared how challenging it has been for SENDIASS to manage the volume and complexity of referrals and that we are not able to meet the needs of families at times.

December 2023

‘All Age Autism Strategy‘ – reviewed the strategy and commented:

Importance of support for families through the lengthy wait for autism assessment.

Expanding the project to gather voices from children and young people in mainstream education and those who do not meet the thresholds for specialist health/social care services.

Suggested including some additional actions to support the sensory overload/sensory sensitivity that is highlighted in the strategy document, for example:

• ‘Advice and training around how to support sensory overload’.
• ‘Advice and training provided to clinical settings, including the best ways to communicate with and support autistic people (to help them feel more comfortable booking and attending appointments)’.
• ‘Information about specialist sensory assessment and advice, and how to access this’.
• ‘Advice and training for education settings around the impact of sensory needs, including support strategies to reduce sensory demands’.
• ‘Information about how to access specialist sensory assessment and advice’.

Information to help autistic adults understand their right to request assessment through social care, and an explanation of the process.

Suggestion to add ‘asking’ or ‘working with’ early years settings, schools and colleges in the action plan.

Suggestion to include ‘school nursing service’.

Annual review – paperwork and portal

Met with LA to share suggestions for annual review paperwork and portal process. Our suggestions included:

• Checklist/monitoring of key deadlines within an annual review, e.g. sending advice to all attendees 2 weeks in advance, decision following the meeting within 4 weeks, issuing amended EHC plan within 8 weeks of sending proposed amendments.
• Information about the purpose and process for families, to help them prepare and feel confident.
• Supporting children and young people to understand the annual review process and take part. Include links to SENDIASS.
• Accessible, alternative ways that families can share views and take part (e.g. video, recording, drawings).
• Questions which capture a clear picture of progress towards outcomes in the EHC plan.
• Capture and follow up where paperwork shows there was disagreement (about progress or provision).
• Prompts in the portal for LA to arrange the review meeting where a child or young person is not currently in a setting.
• Flag/rating system to prioritise where there are indications that the child or young person is not engaging, or where progress is not as expected.
• Preparing for adulthood – highlight in paperwork/portal at an early stage (year 9 at the very latest).
• Space to record the family view about any change to the type of provision, e.g. specialist.
• Suggestion for families to have access to (or be sent a copy of) review paperwork submitted by the setting.
• Acknowledgement and impact of family views submitted.

November 2023

SEND Programme Board

Educational Psychology – delays with assessments. Enquired about priority for children and young people out of education/not attending (local authority assured they are already prioritising).

Local authority data for suspensions showing a downward trend – enquired about whether there might be a link with attendance data, upward trend of children and young people are on reduced timetables (are in school less, or not at all – which might have led to fewer suspensions).

NSFT/NDD waiting lists/EWH backlog – requested overview of waiting lists in a format which is easy to understand (so that we can let families know/help with expectations).

NDD pathway – redesign/recovery. Requested invite to development meetings.

Area SEND Inspection

Met with inspector to share trends and experiences/perspective of families that we hear from – what’s working well, what isn’t (services across education, health and care – including SENDIASS and our identified actions).

SEND Strategy (SEND Priorities)

Suggestions shared for input into the re-wording of the SEND strategy vision.

SEND Journey (SEND Priority 2)

Shared views received from our parents around progress with LA meeting their targets and ongoing concerns with communication.

October 2023

SEND Accountability Board

Key stats from recently published annual report. Annual increase in referrals 10% (up 28% since 2018), website page views up by 38%, YouTube channel views up by 31%.

Increased volume, complexity (and/or support needs) of referrals leading to lengthier response times, and leaving some families with ‘unmet needs’.

Operational capacity and impact to team wellbeing and staff retention is a concern.

Local offer website

Feedback offered:

• Positive in style, navigation, font, headings and language.
• Suggestions made for highlighting specific information and for simplifying some sections of information.

September 2023

Ongoing work with LA to support development of training (EHC needs assessments and annual reviews).

Along with SPCF, we are part of two groups supporting the LA to coproduce new online and face-to-face training for multi-agency practitioners around:

• EHC needs assessments and writing quality advice for EHC processes,
• and annual reviews.

Shared details of Vocational Profiles and suggest that the LA might like to create their own template version, as these helpful person-centred tools are not being used in our county.

‘All Age Autism Strategy’ (ongoing)

Putting forward parent point of view and difficulties faced. Gave feedback:

• that we were hopeful the changes to the Specialist Education Services offer would be beneficial for families and schools.
• that many parents were struggling and in need of support.

Moving into Adulthood  (SEND Priority 4)

Contributed towards changes needed to Moving into Adulthood new Portal and Annual Review Portal. Shared that:

• the moving into adulthood forms are not always being used.
• they should be shared with families in advance of the review meeting.
• the portal was not particularly young person friendly.

SEND Transitions guide – shared that families really liked having a printed copy.

August 2023

EHC portal – draft guidance for families

Reviewed and contributed to the local authority draft guidance for families around using the EHC portal to submit a request for an EHC needs assessment.

SEND Employment Forum

Joined the first SEND Employment Forum to explore how to support employers to support more young people with SEND.

July 2023

Permanent exclusion – checklist for parents/carers

Following a request from SPCF and a community supporter, drafted some information to help parents who want to challenge a permanent exclusion decision.

16+Transition Guide

Input into discussion around preparing the check list for next years Transition guide.

SPCF SEND myth-busting document

Reviewed and responded to draft information from SPCF.

SENDIASS myths/FAQ’s

In response to a suggestion from SPCF, drafted a document covering common myths and misunderstandings about the service.

June to July

E-learning – SEND Awareness

We joined other practitioners and SPCF in reviewing and contributing to the local authority eLearning module around SEND Awareness, including the ‘EHCNA at a glance timeline’.

May 2023

Local Offer development project

Shared recommendations for information on early years and childcare on the Local Offer page.

Reviewed content about health on the Local Offer page.

Video to explain advocacy

Began working with the Engagement hub to coproduce a video for young people to explain advocacy services. To include information about the specific form of advocacy SENDIASS can provide.

April 2023

Preparing for adulthood – informing partners about SENDIASS support for young people

SENDIASS have gathered views of young people and those that support them in a recent survey and are working on how it can support young people ongoing with providing information and advice in ways which work for them. Survey results to be published.

Local Offer development project

Reviewed content on information, advice and support on the Local Offer page.

SEND Accountability Board

Again raised that the EHC portal was a barrier for some families and guided to the feedback provided in March.

Delays to issue of EHCP’s within required timeframes – raised that a communications plan with families is needed.

March 2023

SEND Programme Board

Input to discussions around the data presented by SPCF around the link with ASD and suicide risk.

Requested an update from the LA about the KPI’s around Annual Reviews. (they were being revisited – scroll down to see entry for July 2021).

Shared that parents and carers coming through to SENDIASS tell us that are not always feeling involved in the APDR process, and are finding they have to initiate discussion with SENCO’s.

Deep dive into the NDD pathway – offered, and followed up by providing data for, referrals categorised ASD/awaiting diagnosis.

High demand for the service

March saw significant increase in demand for the service, resulting in 73 ‘referrals waiting’ as at 31st March. A decision was taken and communicated to the LA and partners, and with the Advisory Body, to pause new referrals to the service for the Easter break to enable essential catch-up by the team.

Feedback to the local authority about the new EHC portal

Concerns that initiating an EHC needs assessment request via the portal will be a significant barrier for many of the more vulnerable families in Suffolk. This may delay a young person or parent/carer being able to make a request (and cause delays for the child/young person getting the support they need).

Many of the parents we speak to cannot manage an email and may find the secure access daunting without help.  Suggested that the phone number to ring, as an alternative to the portal, be made more prominent.

Suggested the idea of a phone call/email remaining as a way (a young person or parent) may make a request, which then would trigger the requirement to access the portal and allow further time to complete the family advice, or that their views can be taken over the phone. (ref. s36 of the Children and Families Act 2014, which says the parent or young person has the right to express their views to the local authority orally)

Clarity about the child and young person section (which section applies and at what age etc).

Within the online form, referring to a ‘school of worries’ or school of good things’ may confuse some of the more vulnerable parents and carers with SEND. 

Currently no option for a parent to upload a document (supporting information for the request).

Local Offer development project

Share recommendations for information on information, advice and support on the Local Offer page.

SEND Accountability Board

Shared there are far more families than the few who protested recently. Many parents and carers do not feel comfortable to raise concerns about their negative experiences and their voices are therefore not always heard by services.

Arranged to meet with the appointed Special Advisor.

Understanding parental/family views, sentiment and satisfaction – Impower

Met with Impower as they were keen to find out how we gather and use service feedback. Shared that we gather feedback:

• Through casework – specific appraisal of how the person has viewed our involvement is captured in our database.
• Outcomes (four categories are ‘IAS needs met’, ‘IAS signposted’, ‘Able to participate’ and ‘Needs unmet’.

• People accessing the service are asked if they would be happy to hear from us by email.
• Those who consented are sent an invite to take part in an online survey.
• Feedback received is reviewed and reported on monthly and annually.
• Performance is measured nationally.
• All attendees of our information sessions are sent an online evaluation and data from these is captured in our monthly reports, along with feedback shared in the Teams ‘chat’ at the end of the session.
• Feedback received informs service development.

February 2023

SEND Priority Leads

Raised the lawful reasons to reject a parental request for a setting to be named in an EHC plan, in particular the concern around the use of the word ‘full’. Discussion about being clear on which of the lawful reasons apply, when rejecting a parental request and communicating this with families.

Local Offer development project

Share recommendations for information on preparing for adulthood on the Local Offer page.

Informal discussion:

The finalisation of EHC plans for children transitioning to primary school, too late for support to be agreed and commissioned for their start

Concern over SEND level one training, where wording does not reflect the robustness of the law and could lead to misunderstanding. (linked to what was raised in SEND Priority Leads)

January 2023

SEND Programme Board

Shared trend that families are experiencing long wait times for children/young people’s mental health services and the impact to their education. Highlighted that early intervention would prevent escalation (including increased demand for alternative, bespoke or specialist provision).

October 2022

Review of Suffolk’s specialist Learning disabilities and Autism Service

Shared general experiences and themes of families that we hear from in relation to these specialist services, in particular, with the thresholds and criteria, with children and young people experiencing gaps. We suggested transparency about thresholds and the referral routes for families.

The service shared that families seeking support from SENDIASS usually do not have these specialist services in place and are trying to secure support and services which are available to them.

Attendance/reduced timetables/anxiety

Highlighted the upward trend we are seeing with families seeking support with ‘Attendance’ issues related to reduced timetables and anxiety/access to mental health services. Input offered to local authority services around pathways and information for families.

September 2022

Shared general experiences of families with Impower.

Offered to input to information which can be made available for parents and carers in relation to the revised local authority decision-making processes (EHC plans).

July 2022

SEND Accountability Board
Highlighted continued communication issues and frustrations being experienced by parent/carers coming through to the service, in relation to EHC plans and decisions from the local authority.

May 2022

Barrier to ADHD assessment
Shared with NSFT – issues where parents and carers are being advised their child/young person will not be assessed for ADHD unless they have had an EP assessment.

April 2022

Sensory assessment and support for pupils with sensory processing differences
Parent/carer experiences shared including:
Dissatisfaction shared by parents in the Waveney area re parity of offer regarding free school workshops
Increasing parental reference to, and dialogue in Facebook threads around, the use of SEN regulation 6(h) (see also SEND Code 9.49, point 8) to request a sensory assessment as part of the EHC needs assessment and dissatisfaction where the LA may not consider this reasonable.
Ongoing myth that a diagnosis of a condition is required to gain additional support, request an EHC needs assessment or a referral to SES
Ongoing myth that there are no OTs in Suffolk able to undertake a sensory assessment and ongoing confusion regarding how to access advice for CYP with sensory processing difficulties.
Confusion between the SEND Code category of Physical and Sensory and related SES team (where sensory is vision/ hearing/multi-sensory needs) and sensory processing difficulties.

EHC needs assessments and plans – what the law says
Information on the document drafted (January 2022) published as a webpage.
SENDIASS attended the LA ‘Introduction to SEND Decision-making panels’ session and provided input.

January 2022

EHC needs assessments and plans – what the law says
Drafted a document detailing the law around key decision points within the EHC process.
Offer of exploring providing a resource and/or training for the decision-making panel members (LA and partners).

Child in Need (CIN) assessment
Suggested that information for parents and carers to be made available on the local offer – about requesting a CIN assessment and what they might expect, including understanding thresholds.

NDD – Information for families
Suggestion for some clear information for families about the criteria for assessment, seeking diagnosis and what they might expect following a referral.

November 2021

LA ‘SEND Decision-making’ Terms of Reference and Scheme of Delegation shared with SENDIASS for comment.
Response/issues raised by our service:
Transparency of panel processes
YP/parental preference need to be central to discussions
Consultation process and communication of decision.
Issue of final amended plans, including in phase transfer years, by deadlines

July 2021

SEND Programme Board Key Performance Indicators (KPIs)
Suggestion for the KPIs to align with the lawful timescales for Annual Review of an EHC plan:
Reviews held within 12 months of the date of issue of the original EHC plan, or previous review
School, health and social care informed of pupils needing review that term – at least 2 weeks before the start of term.
EHCP and Annual Review documents reviewed and decision to YP/parents/carers within 4 weeks of review meeting
Amended plan, or decision not to amend after all, within 8 weeks of amendment notice
Amended plan (including the name of the setting for September) in the year of transfer issued by 15th February (or 31^st March for young people moving into post-16 education) 
Additional measure around quality and impact of Annual Reviews

SEND Independent Review
Provided verbal input around common themes, and experiences of SEND families in Suffolk, to the independent reviewer.

May 2021

High frequency themes of enquiries to SENDIASS – shared with the Disabled Children and Young People’s service:
Autism is the highest category of need shared by families accessing the service
Sensory processing needs – difficulty gaining assessments
Mental Health – access/threshold for CAMHS/waiting lists etc
Process for social care assessments requested by parents/carers
Advice missing in EHC needs assessment/plans
CAF’s being closed with no onward support
Prep for adulthood happening late or not at all
Access to short breaks/respite

February to April 2021
4 virtual meetings arranged and attended

Requesting a setting to be named in an EHC plan – family-friendly information
Initiated work to discuss the process and drafted family-friendly information to explain the local authority process, following a request for a setting (by a parent or YP) to be named in section I of an EHC plan.

September 2020

Specialist Admissions for Sept 2020/2021
Flowchart of LA proposed process shared with SENDIASS.
Questions and concerns raised about the process in relation to Annual Review legal timescales, including for phase transfers.

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Young person views

For young people who want to have a say and help shape services. Contact engagementhub@[email protected] or find them on social media…

Parent/carer views

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Local authority – SEND Governance

Read the local authority’s published SEND Programme Committee and Improvement Board minutes and related papers.